Mid-term report 2013 - The European LeukemiaNet

Mid-term report 

08-RNP-071

European LeukemiaNet Midterm Report, 08-RNP-071 

Content 

1. ELN objectives ..................................................................................................................................... 3 

2. ELN activities: scientific quality and impact ......................................................................................... 4 

2.1. Scientific visibility .......................................................................................................................... 4 

2.1.1. WP1 (NMC) ........................................................................................................................... 4 

2.1.2. WP2 (ELIC)............................................................................................................................ 4 

2.1.3. WP 3 (CICS): ......................................................................................................................... 4 

2.1.4. WP 4 (CML in cooperation with WP 17 Registry and Biometry): .......................................... 5 

2.1.5. WP5 (AML): ........................................................................................................................... 5 

2.1.6. WP6 (ALL): ............................................................................................................................ 6 

2.1.7. WP7 (CLL ERIC): .................................................................................................................. 6 

2.1.8. WP8 (MDS):........................................................................................................................... 7 

2.1.9. WP9 (MPD):........................................................................................................................... 8 

2.1.10. WP10 (Diagnostics): ............................................................................................................ 8 

2.1.11. WP11 (cytogenetics): .......................................................................................................... 9 

2.1.12. WP12 (minimal residual disease): ....................................................................................... 9 

2.1.13. WP13 (Next generation sequencing): ............................................................................... 10 

2.1.14. WP14 (SCT): ..................................................................................................................... 10 

2.1.15. WP 15 (infectious diseases): ............................................................................................. 11 

2.2. Meeting and exchange activities ................................................................................................ 12 

2.3. Establishment of databases, registries, studies or similar infrastructures ................................. 13 

2.4. Collaboration with other scientific networks, organizations and industry ................................... 13 

3. European added value and ELN visibility .......................................................................................... 14 

4. ELN management and finances ........................................................................................................ 15 

5. Publicity and publications: scientific quality and impact .................................................................... 16 

6. Future planning, recommendations and conclusions ........................................................................ 16 

7. Appendices ........................................................................................................................................ 17 

7.1. Appendix I - List of Steering Committee ELN – ELN/ESF .......................................................... 17 

7.2. Appendix II - List of the supporting ESF Member Organisations ............................................... 18 

7.3. Appendix III – ELN activities ....................................................................................................... 19 

7.3.1. Meeting and exchange activities ......................................................................................... 19 

7.3.2. Lectures ............................................................................................................................... 20 

7.4. Appendix IV – European added value and ELN visibility ........................................................... 22 

7.4.1. New trials in the ELTR ......................................................................................................... 22 

7.4.2. Registries ............................................................................................................................. 23 

7.5. Appendix V – ELN management and finances........................................................................... 24 

7.6. Appendix VI – Publicity and publications: scientific quality and impact ..................................... 25 

7.6.1. Recommendations and guidelines ...................................................................................... 25 

7.6.2. Public outreach founded by ESF ......................................................................................... 27 

7.6.3. Public outreach not-founded by ESF ................................................................................... 27 

7.6.4 Scientific publications ........................................................................................................... 28 

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1. ELN objectives 

The major objectives of the ELN are to promote research on leukemias with the goal to cure 

these diseases. International cooperation, communication and networking between 

researchers are key to successful progress. This is achieved by novel approaches in 

research and treatment strategies among 113 leading national leukemia study groups and 

their 109 interdisciplinary partner groups. During the funding period ELN has expanded its 

network to outside Europe with new cooperation partners in Armenia, Kirgistan, Israel, and 

the USA. Prospective partners that are interested to join the ELN in the next months are 

located in Uruguay, Australia, Canada, Taiwan, Korea, China, Japan, Egypt, and Saudi 

Arabia. All in all, the ELN brings together about 1180 researchers and physicians in 193 

participating institutions in 39 countries, improving research on leukemia. 

The support of international leukemia working groups and the advanced communication and 

networking structures have led to joint leukemia research activities as e.g. the initiation of 

new research projects, clinical studies and leukemia registries (see appendix 7.3.2.), and the 

implementation of ELN management recommendations (see appendix 7.5.1.). 

Other projects improved the standardized evaluation and monitoring to optimize diagnosis 

and treatment of leukemia across Europe (for instance the harmonized molecular monitoring 

of CML in Europe) and the definitions of relevant study endpoints (e.g. for MPN). 

European clinical trials are important to gain a broad patient collective, to discuss and 

compare results and offer optimal treatment for patients. Current activities include consensus 

decisions on further study endpoints, registries for each leukemia, common standardization 

procedures and classification systems at diagnosis and follow up (molecular monitoring, 

cytogenetics, minimal residual disease assessment) during treatment as well as 

harmonization of data evaluation and reporting. 

The ELN offers innovative ideas, a portfolio of new disease markers, novel targets, drugcombinations 

and dose-optimization studies, vaccination approaches and high-throughput 

technologies such as next generation sequencing in a harmonized setting of European 

collaborations. All WPs and their projects are the basis for high quality research, for 

European excellence in the field of leukemia and for cure of leukemia. This impacts patients, 

health care economics and society and results in faster implementation of new treatments for 

patients across Europe. 

For the successful transfer of new research and treatment results from bench to bedside, the 

training of hematologists is essential. The ELN has regularly organized educational 

workshops for interested hematologists, with a special focus on young physicians from all 

over Europe (see appendix 7.2.1.). In addition, educational and research symposia and 

workshops have been held at major hematologic congresses (see appendix 7.2.1.). 

Spread of excellence was mediated by original articles published in medical journals (full list 

see appendix 7.5.4) and printing brochures and books. The ELN promotes the standard 

treatment recommendations by distributing reprints of recommendations free of charge. 

Interactions with other organizations that have an interest in the leukemias like EHA, EBMT, 

WBMT and WHO regarding clinical trial guidelines and infrastructures are already ongoing. 

The ELN has connected the European Trial Registry (ELTR) to the WHO website, supports 

further interactions and streamlines common goals. 

No deviation of project goals occurred so far. 

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2. ELN activities: scientific quality and impact 

The project has fostered the internationally visible ELN-activities, and the established 

communication and networking structures could be extended. 

2.1. Scientific visibility 

The implementation of ELN management recommendations was successfully promoted to 

improve the understanding and treatment of the different leukemia entities in Europe (entire 

list see attached). This is achieved by novel approaches in management and research 

among 113 leading national leukemia study groups and their 109 interdisciplinary partner 

groups. The network integrates more than 1000 researchers and physicians in 193 

participating institutions in 39 countries, promoting research on all types of leukemia. 

2.1.1. WP1 (NMC) 

The central office of the European LeukemiaNet is the operational headquarter. The 

organisation of the regular meetings and the assistance in the preparation of working group 

meetings was one of the main tasks. NMC also took care of financial matters, funding, help 

with applications to network members and reporting on their activities. 

NMC also manages the ELN Foundation in terms of promotion, financing and administration. 

Goal of the ELN foundation is the collection of donations in support of activities of the ELN. 

Target groups of the ELN foundation are (pharmaceutical) companies, private persons and 

major Foundations. A fundraiser is in charge to contact these target groups. 

2.1.2. WP2 (ELIC) 

WP2 has prepared a sponsoring concept together with WP1 to gain funding for the ELN. This 

will enable the ELN to accept funding for service in return. The ELN will in future have the 

possibility for sponsoring contracts as an additional tool to get financial support. Aim of the 

sponsoring concept is to generate a budget for the ELN which is distributed according to 

transparent criteria. Target groups will be pharmaceutical companies (one-stop-shop). 

ELIC is continuously updating the ELN homepage in regards to meetings and conferences, 

clinical trials, project updates, dissemination of news and the set-up of new project sites. 

The leukemia trial registry (ELTR) has currently registered approximately 90 European 

leukemia trials and was recently restructured. ELIC also links to and updates the homepage 

of the public-private partnership “European treatment and outcome study (EUTOS) for CML”. 

Yearly, an Information Letter is prepared for the symposium in January (in cooperation with 

WP1, NMC), highlighting the current progress on projects, collaborations, meetings, website 

content and lists upcoming meetings (see appendix 7.2.1.). It fosters cooperation amongst 

network members and informs the public on hot topics in leukemia. 

In the name of the ELN ELIC together with the NMC coordinate ELN activities around a 

response to the ‘clinical trials directive’ 2001/20/ec concept paper. 

2.1.3. WP 3 (CICS): 

WP 3 is providing expertise in informatics and statistics to the ELN, in particular in the field of 

AML and CML. Statistical advice regarding registries and clinical trials are offered to all ELN 

members. A multilingual portal for medical forms is provided to support design of case report 

forms in ELN studies. 

In collaboration with WP13 expertise for planning and analysis of biomarker studies is 

provided with a focus on next-generation-sequencing. The leukemia gene atlas 

(http://www.leukemia-gene-atlas.org/) is available for ELN members to support interpretation 

of gene profiling findings. 

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2.1.4. WP 4 (CML in cooperation with WP 17 Registry and Biometry): 

Recommendations: An update of the ELN management recommendations for CML has 

recently been accepted for publication in Blood (June 2013). The second version of the 

recommendations published in 2009 in JCO was listed under the 50 most cited papers of 

JCO (see http://jco.ascopubs.org/content/30/28/3431.full). 

Studies 

• EURO-SKI (EURO-StopKinaseInhibitors): a multinational effort in CML, which is 

planned in 10 countries. In this study an expensive medication planned for life will be 

stopped under controlled conditions and the time free of disease (major molecular 

response) will be assessed. The study is based on the experience of the French 

STIM trial (Mahon et al. Lancet Onc 2010). The study could result in a major impact 

on the quality of life of patients and on the socio-economic burden. The study design 

was discussed in several meetings. In June 2012 the 1 st patient was recruited. As of 

May 31 st , nearly 200 patients are preregistered in 5 countries. Additional countries will 

open the study soon. A first interim analysis is planned at the end of 2013 after the 

inclusion of the first 200 patients with a minimum follow-up of 6 months. The study will 

give major insights on when best to stop TKI therapy in CML patients. 

• First-line studies with 2 nd generation TKI in combination with IFN were started in 

France, Germany (in cooperation with Switzerland and the Czech Republic) and the 

Nordic CML Study group 

Registries: 

• The EUTOS population-based prospective CML registry has registered 2936 CML 

patients by 31.12.2012 provided by 27 study groups from 25 European countries. 

Over a 3-year period the study is performed via the EUTOS for CML project, a 

collaborating project of WP 4 and Novartis. In 2013, the final evaluation of the project 

will be carried out to be published in 2014. The validation of the EUTOS score based 

on these cohorts was prepublished in LEUKEMIA on June 11, 2013. 

• A registry on pregnancies in female and male patients with CML is planned on a 

European basis. This was discussed at several WP4 meetings. CML Pregnancy 

Registries from Russia and Italy were launched as a joint ELN project in February 

2013. In March-May an information letter about the ELN CML Registry was provided 

to colleagues of all ELN countries. In June, representatives from 17 countries had 

expressed interest to join this registry. 

Other projects: 

The standardization of molecular monitoring in CML especially on deep molecular response 


Other topics 

• Further progress and experience in the field of molecular markers and new drugs 

targets have been achieved. A major goal is still the implementation of minimal 

residual disease measurements in clinical trials improving the risk stratification in AML 

and the integrated risk-score. A cooperation between HOVON (the Haemato 

Oncology Foundation for Adults in the Netherlands), SAKK (schweizerische 

Arbeitsgemeinschaft für klinische Studien in der Krebsforschung), and the German 

AML-Cooperative Group on joint trials and analyses was started first results were 

published 

• Registry: Good progress was made in the European APL registry. A total of xx 

patients are registered so far. In addition in Germany several registry are running to 

collect data outside of clinical studies. 

• A web based scoring system for older AML patients was developed on the basis of 

meta-analysis (Krug et al Lancet 2010). 

• Multiple approaches and experiences were reported on the field of allogeneic SCT 

2.1.6. WP6 (ALL): 

The successful national European study groups for ALL, (EWALL) aim to combine their 

efforts in order to create a world-wide leading research group for adult ALL. Integrating 

activities are of major importance and include the development of standardized laboratory 

procedures for diagnostic confirmation, an overview on prognostic factors and on ongoing 

European studies in ALL within a study registry. Phase I-III intergroup studies and the 

combination and standardization of methods, definitions and clinical application of MRD are 

jointly executed research activities. 

Recommendations: 

The EWALL has recently published the value of pre-autologous SCT MRD in Ph+ and Phnegative 

ALL patients (S. Giebel, Eur J Cancer. 2012) 

Studies: 

Different national ALL study groups of the EWALL (European Working group on ALL) are 

leading in the exploration of new antibodies in the treatment of adult ALL with antibody 

studies on Blinatumomab and Inotuzumab. There are several studies on Ph+ ALL going on, 

focusing on elderly patients and Nilotinib and Imatinib in rotation. There are various pilot 

studies with new substances going on in the EWALL. 

New studies with the application of Peg-asparaginase have been presented for the different 

national EWALL study groups . 

New joined retrospective analyses within the EWALL are planned: 

• T-ALL risk factors: 

• Value of pre-allogeneic SCT MRD level in Ph-negative ALL patients: 

• Retrospective analysis the value of pre-allogeneic SCT MRD. 

• Pre-allogeneic SCT molecular status in Ph+ ALL patients 

• Value of monosomal karyotypes in adult ALL patients 

• CNS prophylaxis in patients receiving SCT 

• CNS relapse incidence and management in Ph+ ALL patients 

• Secondary malignancies after ALL therapy in adult 

2.1.7. WP7 (CLL ERIC): 

The European Research Initiative on CLL (ERIC) has fostered scientific credibility, 

competence and excellence of ERIC as a European non-profit organization. Furthermore, it 

connects the European LeukemiaNet and EHA as interacting European promoters of 

competence in hematology and leukemia. Now there are 366 members from 36 countries 

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involved in ERIC. 

Molecular studies: 

The accreditation programme for IGHV gene analysis: focus was on external quality 

assessment in diagnostic laboratories and how to provide certificates 

Clinical Studies 

• ERIC Phase IV trial on Ofatumumab in CLL therapy. international CLL registry for 

spontaneous regression in CLL. The aims of the project were shown such as to 

facilitate studies in ERIC. 

Completed and on-going projects are shared on the website www.ericll.org. 

2.1.8. WP8 (MDS): 

WP 8 is now integrated into the Working group of the European Hematology association, 

EHA MDS Working group. 

The results provided by the WP8 of the ELN have major impact on new diagnostic strategies 

in MDS. This is of particular importance since new drugs are emerging in both lower and 

higher risk MDS. In addition, the Working Group may provide evidence that flow cytometry 

may add in new prognostic scoring systems. To this end the Pavia Meeting in 2011 and 

Amsterdam meeting in 2012 focused on designing prospective multicenter studies to 

emphasize diagnostics and prognostics in MDS which might be included in the new WHO 

classification of hematopoietic neoplasms in [anticipated] 2015. 

A major goal of WP8 is to set up an international MDS clinical trial platform to standardize 

methodology of diagnosis (flow cytometry), therapy (Vidaza, Lenalinomide) and follow up in 

MDS and to allow better comparison of results. 

The platform is now active EMSCO (European Leukemia Net Myelodysplastic Syndromes 

Studies Coordination Office) 


• Therapeutic guidelines on treatment of MDS can be found on the website: 

http://mds.haematologica.org 

• In addition, in the almost finalized diagnostic and therapeutic guidelines in MDS as 

provided by WP8, flow cytometric assessment is now recognized as one of the 

recommended approached in the diagnostic work-up (Leukemia, 2012; Leukemia & 

Lymphoma, 2013) 

Studies: Prospective multicenter studies to emphasize diagnostics and prognostics in MDS 

were initiated. 

Registry: Another project is the successful registry for MDS (EUMDS) a collaboration 

between WP8 and Novartis. In total 1000 patients in 14 countries were registered, first 

results were presented at ASH 2011 and 2012 (de Witte et al.). 

Other topics: 

Collaborations with the MDS Foundation were initiated 

Finally, as can be depicted from the reference list below, the working group is successful in 

translating the workgroup conferences into published documents on behalf of ELN. 

1) Progress studies in EU‐MDS Registry 

General overview of EU‐MDS registry: Currently more than 1,457 patients have been 

reported in the registry. Serbia and Croatia have joined the Registry and it will start reporting 

patients in a few months. Several manuscripts are in preparation, including the general 

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demographic paper which will include the impact of the new IPSS-R. 

2) The fifth international ELN workshop of FCM in MDS,Amsterdam, Netherlands 

October 26‐27, 2012 

3) Progress of the Trial Platform: EMSCO and planned trial(s) 

The ELN-based MDS clinical trial coordinating office (EMSCO) has been established in 

Dresden. The first trial in France and Germany is expected to start before the end of 2013. 

4) ELN diagnostic and therapeutic guidelines and new plans, including specific guidelines for 

allogeneic SCT in MDS 

The manuscript has been submitted to Blood and it is under revision after having received 

the comments of the reviewers. 

2.1.9. WP9 (MPD): 

Projects: 

Clinically relevant end-points in contemporary trials for Ph-neg classical MPNs: A joint project 

of the ELN and IWG-MRT Groups 

The rationale of this project is that the selection of best variables for measuring benefits 

or harms of new interventions in Philadelphia negative classic MPNs is a complex and 

open to debate task. There is a major need to develop clearly defined endpoints to 

support claims of efficacy of therapies for MPNs. These endpoints need to be developed 

and utilized by investigators leading clinical trials in MPNs. The goal of this project is to 

provide guidance in the definition of clinically relevant end-points that can expedite new 

drug approvals for MPNs in the appropriate trial design settings. 

Registries: 

A new registry of patients with MPD and splanchnic vein thrombosis (Budd-Chiari syndrome, 

portal or mesenteric vein thrombosis) has been launched in 2013. 

A new project was presented in 2013 and was opened in May 2013 to collect the cases of 

cerebral venous thrombosis in patients with MPD. 

The registry of pregnancies in patients with MPD was closed for inclusions in 2013? And the 

analysis for a final report and publication is ongoing. 

A MPN&MPNr-EuroNet registry is in planning. 


Several recommendations have been released on behalf of the ELN, as described in the 

appendix 7.5.1. 

The leading project for recommendation in 2013 is the definition of resistance and 

intolerance to ruxolitinib. 

Another consensus conference is ongoing in 2013 to define and harmonize 

histomorphological response criteria to JAK inhibitors. Two face-to-face meetings have been 

organized and the redaction of the final consensus is in progress, with a publication planed 

for Q3 2013. 

2.1.10. WP10 (Diagnostics): 

WP10 aims at pursuing the exploration of the best methods for diagnosis and MRD detection 

in morphology and flow cytometry. 

The morphology faculty, driven by Pr Gina Zini, still works at implementing the atlas of bone 

marrow cells morphology, accessible on the ELN Website. 

In flow, recommendations about accreditation of the flow cytometry laboratory are in 

progress. Part of this will soon be in press in Cytometry Part B, as the result of an 

international workshop where WP10 members participated. Guidelines have been issued in 

France and discussed in Mannheim in February. The February 2013 annual meeting of the 

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group was organized jointly with WP9. A two days course of morphology and flow cytometry 

took place in Munich on March 15 and 16, 2013. 

WP10 is recognized as a scientific working group of the European Hematology Association 

and organized its second session in Stockholm on June 13, 2013. 

The working group has also agreed that flow cytometry (FC) adds significantly to MDS 

characterization, diagnosis and prognosis together with ELN WP8. It may also be useful in 

predicting and monitoring disease during treatment with new and standard therapeutic 

regimens. Repeated FC assessments are strongly recommended not only in cases such as 

ICUS and IDUS, but also to monitor the natural course of the disease in patients with 

untreated low and intermediate-1 risk MDS. The same holds true for patients treated with 

currently available drugs, preferably within clinical trials as conducted by national and 

international collaborating groups. 

2.1.11. WP11 (cytogenetics): 

WP11 cooperates with other WPs on the following projects 

• comprehensive molecular profiling of T-ALL 

• whole-genome sequencing in CLL 

• new cytogenetic risk score in MDS 

• update of the leukemia gene atlas 

WP 11 had several quality management activities in 2012 (Round tests for FISH and 

chromosome banding). 

During the WP11 meeting results from several new studies conducted by WP11-members 

were introduced: A novel solely molecular prognostic scoring system for AML based on 1000 

pts. was presented by C. Haferlach. New data from an international study were shown 

proving that the monosomal karyotype is no independent prognostic marker but is closely 

associated with the complexity of cytogenetic changes (D. Haase). Interim results from a 

multicentric German registry-study of clinical features, treatment and prognosis in patients 

with Monosomy 7 (world-wide the largest data set) were presented b J. Schanz. A. Fabarius 

discussed the relevance of secondary cytogenetic changes in MDS based on a dataset of 

1,544 pts. from the German CML V-study. C. Ganster presented data from an international 

study (supported by the EUGESMA and the ELN Foundation) of MDS cases with 

der(1;7)(p10:q10) a rare abnormality in MDS and could prove that this anomaly has a much 

better prognosis as assumed before. H. Rieder and C. Haferlach presented important data of 

quality management in cytogenetics based on the evaluation of several round interlaboratory 

robin test of FISH- and chromosome banding analysis. C. Haferlach recommended several 

strategies to support the Atlas of Genetics and Cytogenetics in Oncology and Haematology 

which is an inalienable tool for every tumor cytogeneticist worldwide. Finally D. Haase 

enumerated future activities of WP 11 one of which will be the delineation of further rare 

abnormalities in MDS by international cooperations which was very successful for the 

der(1;7) project. 

2.1.12. WP12 (minimal residual disease): 

The minimal residual disease (MRD) working group (WP12) established assays from which 

patients with myeloid leukemias/myeloproliferative neoplasms (MPNs) can benefit from. The 

key approach is the monitoring of minimal residual disease (MRD) using real-time 

quantitative PCR. In addition to standardization of assays (e.g. WT1 and NPM1 mutation in 

AML, and BCR-ABL and JAK2-V617F in MPNs), an important emphasis has been placed on 

standardizing all steps of MRD assessment, including development of a software package to 

allow consistent reporting of MRD results, improving communication between laboratories 

and clinicians, as well as facilitating comparison of results between laboratories (Østergaard 

et al, Leukemia 2011). Having established the optimal MRD assays, their clinical utility is 

now being evaluated in patients. In particular we have recently shown that the selected ELN 

JAK2-V617F assay can predict outcome in informative MPN patients following allogeneic 

transplant, allowing earlier intervention with donor lymphocyte infusion in case of impending 

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relapse, as compared to conventional post-transplant surveillance using chimerism assays 

(manuscript submitted). Moreover, quantitative PCR assays which were subject to intensive 

validation efforts during the ELN program have now been implemented into multicenter 

clinical trials e.g. conducted by the French ALFA, German AMLSG and UK NCRI 

collaborative groups in which they are used to guide treatment approach, including informing 

the application of allogeneic transplantation in first remission. 

2.1.13. WP13 (Next generation sequencing): 

WP13 was first interested in using gene expression profiling for investigating basic research 

topics and the application of microarrays in a clinical setting. 

However, since 2010 next generation sequencing is of much higher interest and takes over 

the focus. The evaluation of both screening methodologies is strongly supported by 

biostatisticians. Microarray data as well as more and more NGS data very recently were 

collected within the ELN network and involved respective subgroups in WP13 as well as 

other WPs in close collaborations. The DACH and the MILE studies are published and data 

is publicly available in the GEO database. 

WP13 cooperates with other WPs on the following projects: 

• comprehensive molecular profiling of T-ALL 

• whole-genome sequencing in CLL, CML 

• update of the leukemia gene atlas 

The IRON-II project is an ongoing major task of WP13. Next generation sequencing studies 

with the goal to harmonize diagnostics and procedures were performed and presented at 

several meetings including ASH 2012 (poster). The next meeting will be held in 7/2013 in 

Munich to combine all efforts from more than 26 labs in europe and other countries (n=13) in 

6 disease related working groups. 

Many other new projects are established in close cooperation with FP-7: http://www.ngsptl.com/. 

This is the "NGS for Targeted Personalized Therapy of Leukemia" headed by G. 

Martinelli in Bologna. 

In addition, the WP13 will start in summer 2013 the IRON-III study to bring NGS to routine 

diagnostics in other laboratories based on shared SOPs and with bioinformatic support. 

2.1.14. WP14 (SCT): 

Main focus of the WP is the harmonization process especially between Europe and the US, 

providing valid information on changes in indications, frequencies among the different 

countries but also among diseases. WP14 makes use of synergies with the European Group 

for Blood and Marrow Transplantation (EBMT) and the Worldwide Network for Blood and 

Marrow Transplantation (WBMT). The main activities include regular surveys on the 

transplantation activity in Europe, recommendations for the use of stem cell transplantation 

assessment of key factors responsible for outcome and, as a current focus, the adaptation of 

transplantation conditions to the needs of elderly patients, mainly with AML and ALL. 

Studies: 

• HCT vs. CT in elderly AML. 


• Several recommendations on stem cell transplantation have been released on behalf 

of the ELN, as described in the appendix 7.5.1. 

• A consensus on the treatment of Graft-versus-Host-Disease was reached and 

published. Participants of WP14 participate to the ELN recommendations team for 

CML. 

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2.1.15. WP 15 (infectious diseases): 

WP15 initiated collaboration with IDSA regarding guidelines for vaccination of patients with 

hematological malignancies in general and after stem cell transplantation. 

WP15 will participate in the ECIL-5 conference in September. 

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2.2. Meeting and exchange activities 

12 meetings, symposia and workshops which reached 902 participants were directly 

financed by ESF. Additional educational meetings (n= 8) were performed with funding 

through unrestricted grants. 

4-5 yearly information booths (see appendix 7.2.1.), ELN, DGIM, ASH, EHA, and DKG- 

Kongress provided information on the ELN to interested visitors. 

• Annual Symposia (8 th to 10 th Annual Symposia of the European LeukemiaNet), 

annual ELN-meetings at EHA and ASH from 2011 to 2013) 

• Scientific working meetings 

o 

4th and 5 th international ELN Workshop on Standardization of Flow Cytometry 

in MDS 2011 and 2012 

o EWALL Meeting Gravenbruch/Frankfurt 2011 and 2012 

o ELN WP10 “Diagnostics” Meeting Munich 2011 

o ELN Recommendation Meeting at ASH 2011 and 2012 

o AML Intergroup Reisensburg Symposium 2013) 

o CML workshop (every year in the end of June in Mannheim, Germany 

• Educational meetings: 

o ELN Frontiers Meetings 

Vienna 2010 

Berlin 2011 

Istanbul 2012 

Prague 2013 (in planning) the meeting will take place in Prague) 

o Naples CML fellow days (educational workshop on chronic myeloid leukemia 

for young hematologists 2010-2013 

• Spread of excellence by 

o multiple educational activities, 

o newsletters (RB 15, September 2010; RB 16, december 2011; RB 17, 

December 2012 

o 82 published manuscripts since 2010 (see appendix 7.5.4) 

o information booths at the annual congresses of the American Society of 

Hematology (ASH), the European Society of Hematology (EHA) and National 

Hematology Congresses, the Annual ELN Symposium, the annual ELN 

frontiers meeting, and the Naples Fellows day 2010 to 2013 (5 information 

booths per year). 

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2.3. Establishment of databases, registries, studies or similar 

infrastructures 

Trials on a European level were discussed, initiated and evaluated in international working 

groups (full list see appendix 7.3.1.). For a complete overview of European leukemia trials 

see also 

http://www.leukemia-net.org/content/leukemias/trial_registry/trial_registry/index_eng.html 

Properly designed and executed patient registries enhance clinical practice, patient 

outcomes, safety, and comparability between studies. The goal of European registries is to 

provide information and to facilitate the analysis and interpretation of data from leukemia 

clinical trials. 

The ELN fostered the initiation and continuation of the following European registries 

(complete list see appendix 7.3.2.): 

• EUTOS registry for CML patients 

• pregnancy registry for CML patients 

• MDS registry 

• APL registry 

• MPN registry 

ELN guidelines for different leukemia entities (in international cooperation) were compiled by 

international panels of experts. The most recent recommendations deal with stem cell 

transplantation, CML, flow cytometry, diagnostic standardization, response criteria for ET and 

PV; and on supportive care (see appendix 7.5.1.). 

2.4. Collaboration with other scientific networks, organizations and 

industry 

Partnerships of the ELN were enhanced, launched or renewed with 

• CML Patient Advocates Network 

• EHA (European Hematologic Association) Scientific working groups with 

WP5,6,7,8,12 

• EBMT (European Group for Blood and Marrow Transplantation) WP14 

• IACRLRD (International Association for Comparative Research on Leukemia and 

Related Diseases) WP4, WP5 

• Kompetenznetz “akute und chronische Leukämien“ 

• HOVON WP4,5 

• SAKK WP4 

• GIMEMA WP4 

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3. European added value and ELN visibility 

The ELN will continue to set high standards for the investigation of all leukemias in Europe 

and qualify medical doctors and scientists with educational activities on treatment 

recommendations, new insights in the emergence of the disease and innovative research. 

The ELN brings together in a collaborative action across Europe 

113 leading national leukemia study groups (Fig. 1) 

109 interdisciplinary partner groups (diagnostics, treatment research, registry, guidelines) 

(more than 1000 physicians and scientists 

193 centers in 39 countries 

Major achievements include: 

• Cooperation to overcome fragmentation within the European leukemia research area 

• International cooperation with centers and scientists in US, Japan and Australia. 

• Accomplishment of a unique leukemia specific infrastructure given by the three 

network centers responsible for management (NMC), information (ELIC) and 

statistics/biometry (CICS) (WP1-3,17). 

• Clinical trials on a European scale through collaboration of the leading national 

leukemia trial groups on the different leukemia entities (WP4-9) and the 

interdisciplinary partner groups in diagnostics and therapy research (WP10-15) 

• Standardized protocols for clinical trials with uniform diagnostic procedures to achieve 

comparable data, resulting in better and equal treatment options across national 

borders 

• Networks of reference laboratories in leukemia diagnostics and pharmacogenetics 

across Europe (WP12, EUTOS for CML) 

• Management recommendations for all leukemias 

• Registries for information on current treatment and best treatment options (EUTOS 

for CML, EU-MDS, APL, CLL, MPN) 

• Improvement of patient care due to personalized treatment options 

• Spread of excellence (ELN Website and publications) and high level training and 

education to all physicians and researchers within leukemia research. 

The ELN is committed to sustain the collaborations within and outside the network and to 

further develop high quality standards in leukemia research, diagnosis and treatment. 

Global collaboration will strengthen the ELN Network within and outside Europe. 

The ELN is already collaborating with networks outside ESF countries. International 

collaborations are currently ongoing in the US, Uruguay, Australia, Canada, Israel, Japan, 

Korea and Russia. 

14


4. ELN management and finances 

As agreed with ESF the funding of year 1 was not fully used in the first half of ESF funding in 

order to prolong the project until the beginning of 2015 and due to the fact that EU funding 

was available until 2010. 

All expenditures were justified by the SC (last meeting June 2013, Stockholm at EHA). 

The following Table summarizes the funding and expenditures. 

Year Meeting Participants 

2011 ELN WP Meetings at 16 th Congress of EHA 105 

4th international ELN Workshop on Standardization of Flow Cytometry 71 

in MDS 

ELN WP10 Diagnostics Meeting 71 

EWALL Meeting Frankfurt 20 

2012 9th Annual Symposium of the ELN 446 

ELN WP Meetings at 17 th Congress of EHA 172 


in MDS 

EWALL Meeting Gravenbruch/Frankfurt 15 

ELN Recommendation Meeting at ASH Congress 27 

2013 10th Annual Symposium of the ELN 420 

Reisensburg Symposium AML Intergroup 51 


15


5. Publicity and publications: scientific quality and impact 

The ELN recommendations have major impact within the scientific community as shown here 

by two examples. 

1) The ELN management recommendations for CML are considered internationally 

influential by experts in the field. The first two editions have been cited by close to 

600 articles each. The 2009 edition in the JCO ranks on position 7 of the “top 50 

Most-cited JCO articles from 2009”. The update of the CML recommendations was 

revised by an international panel and is released in July 2013. Since interest in these 

guidelines is high among hematologists and experts, they will be published as “pocket 

card” as the preceding editions. Pocket cards show the diagnosis and treatment 

synopsis in a comfortable pocket style format and can be ordered from the NMC. 

2) The ELN diagnosis and management recommendations for AML, published in 2010 

in Blood (Doehner et al.), have been successful with 383 citations overall (and nearly 

100 citations per year, respectively). 

6. Future planning, recommendations and conclusions 

The ELN is likely to have a durable impact on leukemia research in Europe. Infrastructure 

and the productive collaboration provided by the ELN have accomplished a valuable 

contribution to progress in the field of leukemia. The ELN will continue in the forefront of 

leukemia research, sharing activities with EHA through scientific groups, COST-, ESF 

Research Networking - and EU 7th framework programmes (e.g. the project “Next 

Generation Sequencing platform for targeted Personalized Therapy of Leukemia" headed by 

Prof. Martinelli, Bologna (http://www.ngs-ptl.com)), but also public- private partnerships and 

other research activities, challenging current knowledge and aiming for a cure of leukemias. 

16


7. Appendices 

7.1. Appendix I - List of Steering Committee ELN – ELN/ESF 

Status* Title** Firstname Surname Gender Institute Universitá di Bologna- Unita Address 

Postal 

Code Town 

Country 

Complessa di Istituti di Cardiologia 

ELN Prof. Dr. Michele Baccarani M ed Ematologia Via Massarenti 9 40138 Bologna ITALY 

ELN Prof. Dr. Tiziano Barbui M 

ELN Prof. Dr. Marie C. Béné F Université Henri Poincare Nancy 1 

ELN Prof. Dr. Thomas Büchner M University of Münster 

ELN/ESF Dr. Daniel Coriu M 

ELN Prof. Dr. Theo J.M. de Witte M 

Azienda Ospedaliera - Ospedali 

Riuniti di Bergamo Largo Barozzi 1 24128 Bergamo ITALY 

Fundeni Clinical Institute - University 

of Medicine and Pharmacy "Carol 

Davila" 

ELN Prof. Dr. Martin Dugas M University of Münster 

9 Avenue de la Foret 

Vandoevre les 

de Haye 54500 Nancy 

FRANCE 

Albert-Schweitzer- 

Campus 1 48129 Münster GERMANY 

258, Fundeni Street, 

sector 2 22328 Bucharest ROMANIA 

Stichting Katholieke Universiteit, 

University Medical Centre Nijmegen Geert Grooteplein 10 6500 HB Nijmegen 

THE 

NETHERLANDS 

Albert-Schweitzer- 

Campus 1 48149 Münster GERMANY 

ELN/ESF Prof. Dr. Günther Gastl M Innsbruck Medical University Anichstrasse 35 6020 Innsbruck AUSTRIA 

ELN Dr. Nicola Gökbuget F University of Frankfurt Theodor-Stern-Kai 8th Floor, Guy's 7 

Frankfurt am 

60590 Main 

GERMANY 

Tower, St. 

ELN - ELN/ESF Dr. David Grimwade M King's College London 

Thomas`Street SE1 9RT London UNITED KINGDOM 

ELN Prof. Dr. Francois Guilhot M Université Universitätsmedizin de PoitiersGöttingen - 2, Rue de la Milétrie 86021 Poitiers cedex FRANCE 

Georg-August-Universität Göttingen - Robert-Koch-Straße 

ELN Prof. Dr. Detlef Haase M Stiftung Öffentlichen Rechts 40 37075 Göttingen GERMANY 

ELN Prof. Dr. Torsten Haferlach M 

ELN Prof. Dr. Joerg Hasford M 

MLL Münchner Leukämielabor 

GmbH 

ELN - ELN/ESF Prof. Dr. Rüdiger Hehlmann M III. Medizinische Universitätsklinik 

ELN/ESF Prof. Dr. Henrik Hjorth-Hansen M 

ELN Prof. Dr. Andreas Hochhaus M 

ELN Prof. Dr. Dieter Hoelzer M 

Max-Lebsche-Platz 

31 81377 München GERMANY 

Ludwig-Maximilians-University 

Munich Marchioninistr. 15 81377 Munich GERMANY 

Pettenkofer Straße 

22 68169 Mannheim GERMANY 

Norwegian University of Science and 

Technology Hogskoleringen 1 7491 Trondheim NORWAY 

Universitätsklinikum Jena, Klinik und 

Poliklinik für Innere Medizin II Erlanger Allee 101 7740 Jena GERMANY 

ONKOLOGIKUM Frankfurt am 

Frankfurt am 

Museumsufer Schaubstr. 16 60596 Main 

GERMANY 

ELN Prof. Dr. Per Ljungman M Karolinska Hospital and Institutet n.a. 14186 Stockholm SWEDEN 

ELN Prof. Dr. Emili Montserrat M 

Hospital Clinic Provincial de 

Barcelona Villarroel, 170 8036 Barcelona SPAIN 

ELN Prof. Dr. Dietger Niederwieser M Universität Leipzig Johannisallee 32A 4103 Leipzig GERMANY 

ELN - ELN/ESF Prof. Dr. G.J. Ossenkoppele M VU Academic Medical Center 

De Boelelaan 1117, 

Postbus 7057 

ELN/ESF Prof. Dr. Tapani Ruutu M Helsinki University Central Hospital Haartmaninkatu 4 

ELN Dr. Susanne Saußele F Universität 

ELN - ELN/ESF Prof. Dr. Bengt Simonsson M Uppsala Universitet 

1007 MB Amsterdam 

00029 

HUS Helsinki 

THE 

NETHERLANDS 

FINLAND 

Pettenkofer Straße 

22 68169 Mannheim GERMANY 

Sankt Olofsgatan 

10B 75185 Uppsala SWEDEN 

ELN/ESF Prof. Dr. André Tichelli M Kantonsspital Basel Petersgraben 4 4031 Basel SWITZERLAND 

17


7.2. Appendix II - List of the supporting ESF Member Organisations 

Austrian Science Fund (FWF) 

The Czech Leukemia Study Group – for life (CZ-CELL) 

(withdraw support in 2012) 

Austria 

Czech Republic 

Haimaom Foundation (withdraw support in 2012) 

Academy of Finland, Research Council for Health 

Deutsche Forschungsgemeinschaft (DFG) 

Nederlandse Organisatie voor Wetenschappelijk Onderzoek 

(NWO) 

Research Council of Norway 

Consiliul National al Cercetarii Stiintifice din Invatamantul 

Superior (CNCSIS) 

Swedish Research Council (VR) 

Swiss National Science Foundation (SNSF) 

Medical Research Council (MRC) 

Finland 

Germany 

Netherlands 

Norway 

Romania 

Sweden 

Switzerland 

United Kingdom 

18


7.3. Appendix III – ELN activities 

7.3.1. Meeting and exchange activities 

Year Meeting Participants 

2011 ELN WP Meetings at 16 th Congress of EHA 105 


in MDS 

ELN WP10 Diagnostics Meeting 71 

EWALL Meeting Frankfurt 20 

2012 9th Annual Symposium of the ELN 446 



in MDS 

EWALL Meeting Gravenbruch/Frankfurt 15 

ELN Recommendation Meeting at ASH Congress 27 

2013 10th Annual Symposium of the ELN 420 

Reisensburg Symposium AML Intergroup 51 


see also p. 15 

19


7.3.2. Lectures 

Date City Title of the congress or symposia Title of the lecture Speaker 

09.04.2010 Kiew 

Workshop " Modern diagnostic and treatment 

approach to chronic myeloid leukemia" 

On the path to cure CML - New developments 

Prof. R. Hehlmann, ELN Coordinator 

09.04.2010 Kiew 

Workshop "Modern diagnostic and treatment Should first line imatinib treatment be optimized by combination 


approach to CML" 

with IFN or by higher imatinib dose? 

12.04.2010 Genova International Meeting on CML Updated ELN recommendations for the management of CML Prof. R. Hehlmann, ELN Coordinator 

18.04.2010 Washington 

AACR - session on coordination of translational European LeukemiaNet, 

cancer research at the EU 

enabling personalized Leukemia diagnosis in Europe and beyond 


24.04.2010 Warsaw Polish School of Hematology First and second line therapy of CML Prof. R. Hehlmann, ELN Coordinator 

08.05.2010 Split 

CML Symposium at Croatian Cooperative Group for European cooperation in leukemia research. Challenges and 

Heamtologycal disorders 

perspectives 


17.05.2010 Naples European fellows educational day 

EUTOS for CML. An innovative collaboration between ELN and 

Novartis 


17.05.2010 Naples 

The management of CML: current treatment 

Stem cell transplantation in CML treatment, and accelerated and 

paradigms and future perspectives. An educational 

blast phase management 

day for European fellows 

Dr. Susanne Saußele 

18.05.2010 Naples European fellows educational day The revised ELN recommendations Prof. R. Hehlmann, ELN Coordinator 

04.06.2010 Chicago ASCO 

Current best practices for management of accelerated / blast 

phase CML 


01.10.2010 Venice Viruses, Genes and Cancer workshop Viral expression and pathogenesis Prof. R. Hehlmann, ELN Coordinator 

13.10.2010 Brussels 

European Cancer Patient Coalition (ECPC) Cancer The European LeukemiaNet Cooperative research to cure 

Summit: Making the Cancer Partnership work leukemia 


20.10.2010 Vienna 

ELN Frontiers Meeting 2010 ‘New benchmarks in 

leukemia: Focus on CML, AML and MDS’ 

Improving CML Management and the path to cure 


23.10.2010 Vienna 

ELN Frontiers Meeting 2010 ‘New benchmarks in 

leukemia: Focus on CML, AML and MDS’ 

The concept of cure and the path to cure 


28.10.2010 Sinaia Society of Hematology, Romania 

Current options for first line treatment of CML and impact on 

prognosis 


04.12.2010 Orlando CML Workshop How to optimize TKI treatment Dose? Schedule? Interferon? Prof. R. Hehlmann, ELN Coordinator 

07.12.2010 Mission Inn Fifth International Workshop in CML and MPN 

Treatment optimization in CML by tolerability adapted high dose 

imatinib 


20.01.2011 Bologna 

Nuovi Traguardi nella Cura della Leucemia Mieloide 

Chronic myeloid leukemia - Once upon a time 

Cronica 


26.03.2011 Warsaw Polish School of Hematology New first line approaches to a cure of CML Prof. R. Hehlmann, ELN Coordinator 

31.03.2011 Brüssel Hearing zur Clinical trial directive Clinical trials directive Prof. R. Hehlmann, ELN Coordinator 

03.05.2011 Wiesbaden 

117. Kongress der Deutschen Gesellschaft für 

Innere Medizin e.V. 

Neues in der Therapie der chronischen myeloischen Leukämien Dr. S. Saußele 

16.05.2011 Neapel European fellows educational day How to manage blast crisis Dr. Susanne Saußele 

16.05.2011 Neapel European fellows educational day 

Management of special CML populations: pregnant, paedriatric 

and elderly patients 


17.05.2011 Naples European fellows educational day Successes and perspectives of treatment optimization Prof. R. Hehlmann, ELN Coordinator 


EUTOS for CML - the collaboration between ELN and Novartis 

continues 



Advanced methods and clinical application of disease monitoring: 

Prof. Dr. Martin Müller 

BCR-ABL quantification and mutation detection 

20.05.2011 St. Petersburg Symposium The goals of CML therapy Prof. R. Hehlmann, ELN Coordinator 

02.07.2011 Mannheim EUTOS-Meeting EURO-SKI Dr. S. Saußele 

02.07.2011 Mannheim EUTOS-Meeting Variant chromosomal aberrations Dr. S. Saußele 

09.09.2011 Berlin 

1st International Congress on Controversies in 

Stem Cell and Cellular Therapies (COSTEM) 

Allogenic SCT for CML 


10.09.2011 Bonn 

Fortbildungsveranstaltung: Fortschritte in der 

Therapie Hämatologischer Neoplasien, 

Erstlinientherapie der CML 


Universitätsklinikum Bonn 

12.09.2011 Kurashiki Invited speech at the University Approaching cure in chronic myeloid Leukemia Prof. R. Hehlmann, ELN Coordinator 

13.09.2011 Fukuoka Invited speech at the University New standards of care in CML Prof. R. Hehlmann, ELN Coordinator 

14.09.2011 Tsukuba Invited speech at the University Approaching cure in chronic myeloid Leukemia Prof. R. Hehlmann, ELN Coordinator 

15.09.2011 Tokyo XXV. Symposia of the IACRLRD Prognostic factors in CML Dr. S. Saußele 

16.09.2011 Tokyo 

XXV. Symposia of the IACRLRD, 50 years Jubilee 

lecture 

Approaching a cure in chronic myeloid Leukemia 


19.09.2011 Dubrovnik 

“LEUKEMIA AND LYMPHOMA - East and West Are 

Together” 

Prognostic tools in CML 


28.09.2011 Kiew Workshop "Perspectives of frontline Therapy" First-line treatment options for CML in 2011 Prof. R. Hehlmann, ELN Coordinator 

08.10.2011 Berlin ELN Frontiers Meeting Imatinib optimisation strategies – can we improve outcomes? Prof. R. Hehlmann, ELN Coordinator 

08.10.2011 Berlin ELN Frontiers Meeting Quality of life of patients with CML Dr. S. Saußele 

09.10.2011 Berlin ELN Frontiers Meeting New treatment approaches aiming at cure Prof. R. Hehlmann, ELN Coordinator 

14.10.2011 Bergamo 

Independent Clinical Research in Oncology, Revision of the Clinical Trials Directive 2001 – challenges and 

Fondazione Internazionale Menarini 

chances 


14.10.2011 Bergamo 

Independent Clinical Research in Oncology, 

Fondazione Internazionale Menarini 

Chronic myeloid leukemia 


20


Date City Title of the congress or symposia Title of the lecture Speaker 

28.10.2011 

Sofia National Congress of Hematology of the Bulgarian 

(Pravets) Society of Hematology 

First-line treatment options for CML in 2011 


03.11.2011 New York 

6th International Congress on Myeloproliferative 

Diseases and Myelodysplastic Syndromes 

Update of management of advanced phase CML 


12.12.2011 San Diego ASH CML The role of 2nd generation TKI Prof. R. Hehlmann, ELN Coordinator 

13.12.2011 La Jolla 6th Post-ASH International CML and MPN Workshop Prognostic prediction in CML Prof. R. Hehlmann, ELN Coordinator 

25.02.2012 Berlin 30. Deutscher Krebskongresses Aktuelle Prognosefaktoren und Erstlinien-Therapie bei CML Prof. Dr. M. Müller 

10.03.2012 Orlando Global Biomarkers Consortium Cancer biomarkers History and Overview Prof. R. Hehlmann, ELN Coordinator 

03.04.2012 Washington AACR Meeting 

Towards harmonised diagnosis and treatment options for 

leukemia subtypes in Europe and beyond (EUROPEAN 

LEUKEMIANET) 

Dr. S. Saußele 

20.04.2012 Warsaw Polish School of Haematology Rationale for the management of CML in 2012 Prof. R. Hehlmann, ELN Coordinator 

20.05.2012 Naples 

The management of CML: current treatment Stem cell transplantation in CML chronic, accelerated and blast 

paradigms and future perspectives. An educational phase management 


20.05.2012 Naples 

The management of CML: current treatment 

paradigms and future perspectives. An educational Quality of life in patients with CML 


day for European fellows 


Advanced methods and clinical application of disease monitoring: 


BCR-ABL quantification and mutation detection 


Cytogenetics and/or Molecular Response: What are the new 

standards of monitoring 


14.06.2012 Amsterdam EHA 

New EU Clinical Trials Directive: Revision 2012 - Measures taken by 


the ELN to support clinical trials 

22.06.2012 Schwedt I. International Symposium in Oncology Schwedt Prevention of blast crisis Prof. R. Hehlmann, ELN Coordinator 

22.06.2012 Schwedt I. International Symposium in Oncology Schwedt CML-Mangament 2012 Prof. R. Hehlmann, ELN Coordinator 

29.06.2012 Mannheim CML-Studientreffen 

Follow up 2012 / Blastenkrise, 2nd generation TKI 2nd line / EURO- 


SKI Initiierung / QOL in der CML-Studie V (Tiger) 

03.07.2012 Moscow 

Annual Meeting of the Moscow Russian Society of Response prediction and treatment strategy with 2nd generation 


Hematology 

TKI 2nd line 

04.07.2012 Moscow 

Annual Meeting of the Moscow Russian Society of 

Hematology 

Current best options for 1st line treatment of CP-CML 


04.07.2012 Moscow 

Annual Meeting of the Moscow Russian Society of 

Hematology 

New frontline options of TKI treatment in CML 


08.09.2012 Barcelona 

2nd World Congress on Controversies in 

Hematology (COHEM) 

Preferred first-line treatment of CML 


14.09.2012 St. Petersburg CML-day at the Raisa Gorbatcheva conference 2012 Optimized imatinib Management of blast crisis Prof. R. Hehlmann, ELN Coordinator 

15.09.2012 St. Petersburg CML-day at the Raisa Gorbatcheva conference 2013 Management of blast crisis Prof. R. Hehlmann, ELN Coordinator 

15.09.2012 St. Petersburg CML-day at the Raisa Gorbatcheva conference 2013 CML blast crisis Dr. S. Saußele 

22.10.2012 Stuttgart 

Gemeinsame Jahrestagung der Deutschen, 

Österreichischen und Schweizerischen 

CML - TKI lebenslang oder absetzen!? 


Gesellschaften für Hämatologie und Onkologie 

27.10.2012 Venice Int. Workshop on “Viruses, Genes and Cancer “ From Abelson virus to targeted therapy of CML Prof. R. Hehlmann, ELN Coordinator 

11.11.2012 Istanbul ELN-Frontiers-Meeting TKI alone vs. other options Prof. R. Hehlmann, ELN Coordinator 

09.12.2012 Atlanta ASH 

Proposal of a Clinical Trial Regulation to replace Clinical Trial 

Directive 2001 


14.03.2013 Bejing 

Collaboration between Chinese hematologists and Cooperating with the European LeukemiaNet (Speech at the 

the European LeukemiaNet 

Hematology Oncology Center of Beijing Children’s Hospital) 


16.03.2013 Seoul 

Asia CML Study Alliance (ACSA)-ELN Consensus 

meeting 

ELN-Recommendations 2013 and their impact on clinical practice Prof. R. Hehlmann, ELN Coordinator 

15.04.2013 Bologna 

International Meeting on "New drugs in 

Hematology" 

CML - Status of the art of treatment 


13.05.2013 Naples European fellows educational day Current treatment paradigments Prof. R. Hehlmann, ELN Coordinator 

17.05.2013 Novosibirsk II Eurasian Hematology Forum Biology of CML Prof. R. Hehlmann, ELN Coordinator 

17.05.2013 Novosibirsk II Eurasian Hematology Forum Optimal treatment strategy for chronic myeloid leukemia today Prof. R. Hehlmann, ELN Coordinator 

21.05.2013 Naples European fellows educational day Early prediction of prognosis by diagnostic and response markers Prof. R. Hehlmann, ELN Coordinator 

22.05.2013 Naples European fellows educational day Prevention of blast crisis Prof. R. Hehlmann, ELN Coordinator 

All Russian Scientific Conference with International 

24.05.2013 

Participation «Innovative Technologies in 

St. Petersburg 

Neuroendocrinology, Neuroscience and 

The modern concept of CML 


Hematology», Almazov Centre 

Educational event “Managing and Integrating 

26.05.2013 Hamburg 

Allogeneic Stem Cell Transplantation in the 

Biology and natural course of CML 

Management of Myeloproliferative Neoplasms” of 


the CMWP 

21


7.4. Appendix IV – European added value and ELN visibility 

7.4.1. New trials in the ELTR 

UKALL 14 

MARALL 

AMLSG 16-10 

EuroSKI 

HOMB 114242 

ARD12042 

BUM-5/GVH 

C AMN107 Y 2101 

JAKARTA 

HCT vs CT 

B1931022 

ARCADE 

ENESTFreedom 

EPIC 

RELIEF 

I3X-MC-JHTB 

JAKARTA2 

PIRON01 

OCEAN 

A Randomized Trial for Adults With Newly Diagnosed Acute Lymphoblastic Leukemia 

Phase I/II study combining humanised anti-CD20 (veltuzumab), anti-CD22 (epratuzumab) or both 

monoclonal antibodies with chemotherapy in adults with recurrent B-precursor acute lymphoblastic leukaemia 

(ALL) – MARALL 

Phase-II study evaluating midostaurin in induction, consolidation and maintenance therapy also after allogeneic 

blood stem cell transplantation in patients with newly diagnosed acute myeloid leukemia exhibiting a FLT3 

internal tandem duplication 

Molecular and Functional Characterisation of Bone Marrow Function in Normal Subjects, Myelodysplastic 

Syndrome and Secondary Disorders of Haematopoiesis 

Multicenter prospective trial estimating the persistence of molecular remission in chronic myeloid leukemia after 

stopping TKI 

An open-label, multi-center study investigating the safety and efficacy of Ofatumumab therapy versus physicians' 

choice in patients with bulky Fludarabine refractory chronic lymphocytic leukaemia (CLL) 

A Randomized Phase II, Open-Label Study of the Efficacy and Safety of Orally Administered SAR302503 in 

Patients With Polycythemia Vera (PV) or Essential Thrombocythemia (ET) Who Are Resistant or Intolerant to 

Hydroxyurea 

Double-blind, Randomised, Placebo-controlled Multicentre Phase III Clinical Study Followed by Open-label Phase 

on the Efficacy and Tolerability of Budesonide 3 mg Effervescent Tablet in Patients With Resistant Oral Chronic 

GvHD 

A Single-arm Dose-finding Phase Ib Multicenter Study of the Oral Smoothened Antagonist LDE225 in 

Combination With Nilotinib in Chronic Phase Chronic Myeloid Leukemia Patients Who Have Failed Prior 

Therapy With Other BCR-ABL Tyrosine-kinase Inhibitors 

A Phase 3, Multicenter, Randomized, Double-Blind, Placebo-Controlled, 3-Arm Study of SAR302503 in Patients 

with Intermediate-2 or High-Risk Primary Myelofibrosis, Post-Polycythemia Vera Myelofibrosis, or Post-Essential 

Thrombocythemia Myelofibrosis with Splenomegaly 

Randomized Phase III Study Comparing Conventional Chemotherapy to Low Dose Total Body Irradiation-Based 

Conditioning and HCT From Related and Unrelated Donors as Consolidation Therapy for Older Patients With 

AML in 1st Complete Remission 

An Open-Label, Randomized Phase 3 Study Of Inotuzumab Ozogamicin Compared To A Defined Investigator's 

Choice In Adult Patients With Relapsed Or Refractory CD22-Positive Acute Lymphoblastic Leukemia (ALL) 

A Multicenter, Randomised, Double-blind, Placebo-controlled Study of Darbepoetin Alfa for the Treatment of 

Anaemic Subjects With Low or Intermediate-1 Risk Myelodysplastic Syndrome (MDS) 

A Single-arm, Multicenter, Nilotinib Treatment-free Remission Study in Patients With BCR-ABL1 Positive 

Chronic Myelogenous Leukemia in Chronic Phase Who Have Achieved Durable Minimal Residual Disease 

(MRD) Status on First Line Nilotinib Treatment 

A Phase 3 Randomized,Open-Label Study of Ponatinib Versus Imatinib in Adult Patients With Newly Diagnosed 

Chronic Myeloid Leukemia in Chronic Phase 

Polycythemia Vera Symptom Study Evaluating Ruxolitinib Versus Hydroxyurea in a Randomized, Multicenter, 

Double-Blind, Double-Dummy, Phase 3 Efficacy and Safety Study of Patient Reported Outcomes 

A Phase 2 Study of LY2784544 in Patients With Myeloproliferative Neoplasms 

A Phase II, Multicenter, Open Label, Single Arm Study of SAR302503 in Subjects Previously Treated With 

Ruxolitinib and With a Current Diagnosis of Intermediate or High-Risk Primary Myelofibrosis, Post-Polycythemia 

Vera Myelofibrosis, or Post-Essential Thrombocythemia Myelofibrosis 

Iron overload in MDS patients: The value of new iron parameters and MRI T2* of heart and liver as predictor of 

iron overload 

A non-interventional observational post authorisation study to evaluate safety and efficacy in patients receiving 

azacitidine in daily clinical practice in the Netherlands 

22


7.4.2. Registries 

Entity Title Start registry Website 

European Registries 

APL 

PROMYSE: A pan-European registry for relapsed Acute 

Promyelocytic Leukemia patients 

2009 

http://www.leukemianet.org/content/leukemias/aml/apl/apl_register/index_eng.html 

CLL 

International CLL registry for spontaneous regression in CLL of the 

European Research Initiative on CLL (ERIC) 

2011 

http://www.ericll.org/projects/registry_CLL_spontaneous_regressio 

n_delGiudice.php 

CLL 

European Online registry and support for Immunoglobulin gene 

sequence interpretation of ERIC 

http://www.ericll.org/projects/index.php 

CML European EUTOS for CML Register 2007 http://www.eutos.org/content/registry/index_eng.html 

Out-study (Patients diagnosed between 2002 and 2006 treated wih 

imatinib frontline and enrolled in prospective studies) 

In-study (Patients diagnosed between 2002 and 2006 treated wih 

imatinib frontline and already registed in national existing 

databases) 

Prospective poulation based (Newly diagnosed CVML patients with 

a specificed country/region irrespective of the treatment they 

recieved) 

MDS 

EUMDS: A Prospective, Multicenter European Registry for Newly 

Diagnosed Patients With Myelodysplastic Syndromes of IPSS Low 

and Intermediate-1 Subtypes 

2008 http://www.eumds.org/ 

MPN 

ERNEST: European Registry for Myeloproliferative Neoplasms 

towards a better understanding of Epidemiology, Survival and 

Treatment 

Patients with diagnosis of Ph- MPNs [ ET, PV, PMF, PPV-M, PET-MF]; 

diagnosis according to 2008 WHO criteria. Diagnosis of MPN after 

2001. 

in planning 

ALL 

National Registries 

Biomaterial and prospective data collection for 

diagnosis, treatment and clinical course of ALL of the 

adults (German GMALL Register) 

2010 

AML German AML Register of the Study Alliance Leukemia (SAL) 2010 http://www.sal-aml.org/aml-register/einfuehrung 

CML 

German CML Register study (CML Study VI): Epidemiological study 

looking at the medical situation of CML patients 

2013 

(will start 

soon) 

MDS German MDS Register Düsseldorf 1999 http://www.mds-register.de/ 

MPN 

Trials 

German Register for rare myeloproliferative neoplasms 

diseases of mast cells 2010 

diseases of eosinophils 2009 

Osteomyelofibrosis 2012 

Trial registries 

European Leukemia Trial Registry of the European LeukemiaNet 

http://www.leukemianet.org/content/leukemias/trial_registry/database/index_eng.html 

http://www.kompetenznetzleukaemie.de/trial/pdf/knl_en/shortprotocol_knl_LN_NN_2011_452.pdf 

?id=452 

Trials 

CLL trials registry for improvement in the long-term follow-up of CLL 

patients in European Trials: an ERIC Initiative 

upcoming 

http://www.ericll.org/pdf/slides/100610_barcelona/trials_registry_u 

pdt_hillmen.pdf 

23


7.5. Appendix V – ELN management and finances 

Budget 2010 

Budget '10 

Budget '11 

Budget '11 

Budget '12 

Budget '12 

Budget '13 

Tentative '13 

Budget '14 

Tentative '14 

Budget '15 

Tentative '15 

Total Budget 

Budget Heading 

(revised 

proposal) 

issued 

(revised 

proposal) 

issued 

(proposal) 

issued 

(proposal) 

Budget 

(proposal) 

Budget 

(proposal) 

Budget 

for 5 years 

(May 2010 to 

(EUR) (EUR) (EUR) (EUR) (EUR) (EUR) (EUR) (EUR) (EUR) (EUR) (EUR) (EUR) May 2015) 

Committee meetings 30.000 506 5.000 0 30.000 0 30.000 30.000 

Mid-term review (*) 0 

Science meetings: 35.000 0 35.000 35.000 35.000 

- Workshops 15.000 10.794 10.500 15.000 15.000 5.000 5.000 

- Conferences 20.000 20.000 80.000 61.500 55.000 60.000 33.000 

- School 

Grants: 

- Exchange visits 0 2000 0 

- Short visits 

Publication & dissemination 7.000 0 20.000 20.000 7.000 20.000 7.000 20.000 7.000 20.000 10.000 10.000 

External administrative costs 3.240 0 0 0 0 0 

Data base 

Coordination 

Miscellaneous 

Total of the proposal 75.240 62.000 72.000 72.000 72.000 353.240 € 

Total of the REAL plans * 506 50.794 110.500 96.500 90.000 48.000 

Expected annual budget 

for networking 84.218 84.218 79.293 74.368 74.368 396.463 € 

Unallocated funds (left over) 83.712 83.712 33.424 117.136 -31.208 85.928 -22.133 63.796 -15.633 48.163 -48.000 163,32 

ESF administrative costs (**) 14.283 14.283 19.208 24.133 24.133 

Total budget (incl **) 98.500 98.500 98.500 98.500 98.500 492.500 

(*) Chair's participation at the EMRC Standing Committee Plenary Meeting in order to present the mid-term report 

(**) ESF administrative costs of 14.5% of requested contributions w ill be levied 

Estimated values 

* Funding since joining of the Netherlands not only 77 380€/year (as of 03.08.2010) but 84.220 € for networking 

24


7.6. Appendix VI – Publicity and publications: scientific quality and 

impact 

7.6.1. Recommendations and guidelines 

25


26


7.6.2. Public outreach founded by ESF 

Type of Activity Target group Description of activity 

RNP website 

broad scientific 

community 

Website of the European LeukemiaNet (Personnel, Hosting, Domain 

Fees) 

Circulation/distribution 

(Nbr of subscribers/ 

prints etc.) 

na 

Monitored/ 

maintained by 

European 

Leukemia 

Information 

Center (ELIC) 

web/email address if 

applicable 

leukaemianet.eu, 

YES leukeaemia.eu 

mailing list 

RNP research 

community 

Design and printing Invitation and Programm of the ELN Symposia 

2012 

all registrated Network 

associates members of management 

the ELN 

center (NMC) 

YES 

newsletter 


community Design and printing of the ElN information letter No. 8 and No. 9 

all registrated 

associates members of Network 

the ELN and anyone management 

online via website center (NMC) 

YES 

RNP website 

other 

RNP research 

community 


community 

website of European Leukemia Trial Registry 

information booths at all important scientifc congresses in the field 

of hematology (EHA; ASH, DGHO) - not funded bythe ESF 

European 

all registrated Leukemia 

associates members of Information 

the ELN 

Center (ELIC) 

participants of the 

congress 

Network 

management 

center (NMC) 

ESF acknowledged 

www.leukemiatrials.eu; 

www.studienregisteronline.de 

YES 

YES 

7.6.3. Public outreach not-founded by ESF 

Type of Activity Target group Description of activity 

Circulation/ 

distribution 

(Nbr of 

subscribers/ 

prints etc.) Monitored/ maintained by 

ESF acknowledged 

web/email address if applicable 

Newsletter of the ELN Hematologists Every year we reported about the scientific news of the ELN 

Network management 

center (NMC) 

yes (since the 

funding of the ESF) 

New flyer about the ELN 

Hematologists 

Update of information about key activities of the ELN incl. an 

overview about the workpackages and a description how to join the 

ELN as well as contact details 


center (NMC) 

no 

Newsletter of the ELN 

Foundation in different 

languages 

Physicians and patients; 

sponsors 

Information about the excellence of the ELN with the target to find 

sponsors 


center (NMC) 

no 

ELN Foundation website 

Physicians and patients; 

sponsors 

Information about the excellence of the ELN with the target to find 

sponsors 

European Leukemia 

Information Center (ELIC) no 

http://www.elnfoundation.or 

g 

Flyer about the EUTOS for 

CML project Physicians and patients (CML) Information about the achievements 2007-2010 


center (NMC) 

no 

EUTOS for CML website Physicians and patients (CML) Imformation about CML 

European Leukemia 

Information Center (ELIC) no 

http://www.eutos.org 

Pocket cards CML 

recommendations 

The ELN recommendations in compact form for physicians treating 

CML patients on a card in a size which can be put in the pocket of a 

Physicians treating CML patients doctors white coat 


center (NMC) 

no 

Ballpoints 

New ELN booth 

Online Newsletter 

List of the ELN 

recommendations 

Physicians treating patients 

with leukemia; sponsors 

Visitors of hematological 

congresses 

all registered associated 

members of the ELN 

Physicians treating patients 

with leukemia 

Ballpoints with the contact information of the ELN or the ELN 

Foundation, "means of advertising" for the booth at scientific 

congresses and meetings 

Updating the information on the ELN booth with less but more 

targeted informations 

Every second months informations by E-Mail about new clinical trials, 

publications out of the ELN, and news of the ELN 

Print out of the List of the ELN treatment recommendations for the 

different entities of Leukemia published on the ELN Website, 

distribute on the ELN information booth at congresses and meetings 


center (NMC) 

no 


center (NMC) 

no 

no (but will be 

European Leukemia acknowledged in 

Information Center (ELIC) the future) 


center (NMC) 

yes, on the 

website 

http://www.leukemianet.org/content/physicians/re 

commendations/index_eng.ht 

ml 

27


7.6.4 Scientific publications 

Author(s) 

Abdel-Wahab O, Pardanani A, Bernard OA, 

Finazzi G, Crispino JD, Gisslinger H, Kralovics 

R, Odenike O, Bhalla K, Gupta V, Barosi G, 

Gotlib J, Guglielmelli P, Kiladjian JJ, Noel P, 

Title 

Unraveling the genetic underpinnings of 

myeloproliferative neoplasms and 

understanding their effect on disease 

Type of 

Publication 

Cazzola M, Vannucchi AM, Hoffman R, Barbui course and response to therapy: 

T, Thiele J, Van Etten RA, Mughal T, Tefferi 

A. 

proceedings from the 6th International 

Post-ASH Symposium. article Am J Hematol. 

ECIL-3 classical diagnostic procedures for 

the diagnosis of invasive fungal diseases 

Bone Marrow 

Arendrup MC, Bille J, Dannaoui E, Ruhnke M, Heussel in patients CP, with Kibbler leukaemia. C 

article 

Transplant. 

Barbui T, Barosi G, Birgegard G, Cervantes F, 

Finazzi G, Griesshammer M, Harrison C, 

Hasselbalch HC, Hehlmann R, Hoffman R, Philadelphia-negative classical 

Kiladjian JJ, Kröger N, Mesa R, McMullin MF, myeloproliferative neoplasms: critical 

Pardanani A, Passamonti F, Vannucchi AM, concepts and management 

Reiter A, Silver RT, Verstovsek S, Tefferi A; recommendations from European 

European LeukemiaNet. 

LeukemiaNet. article J Clin Oncol. 

If Other, 

specify In (journal title…) Volume, pages, year… 

Peer-reviewed 

ESF acknow-ledged 

Open Access (OA) 

If OA, 

enter 

web 

address 

Funde 

d by 

ELN 

Recomm Meeti 

endation ESF ng 

Pubme 

d 

recher 

che 

2012 May;87(5):562-8. doi: 

10.1002/ajh.23169. Epub 2012 

Mar 28. 

x 

2012 Aug;47(8):1030-45. doi: 

10.1038/bmt.2011.246. Epub 

2012 Jan 9. x x 

2011 Feb 20;29(6):761-70. doi: 

10.1200/JCO.2010.31.8436. 

Epub 2011 Jan 4. x x 

Barbui T, Thiele J, Passamonti F, Rumi E, 

Boveri E, Ruggeri M, Rodeghiero F, d'Amore Survival and disease progression in 

ES, Randi ML, Bertozzi I, Marino F, Vannucchi essential thrombocythemia are 

AM, Antonioli E, Carrai V, Gisslinger H, 

Buxhofer-Ausch V, Müllauer L, Carobbio A, 

Gianatti A, Gangat N, Hanson CA, Tefferi A. 

significantly influenced by accurate 

morphologic diagnosis: an international 

study. article J Clin Oncol. 

2011 Aug 10;29(23):3179-84. 

doi: 

10.1200/JCO.2010.34.5298. 

Epub 2011 Jul 11. 

x 

Barosi G, Birgegard G, Finazzi G, 

A unified definition of clinical resistance 

Griesshammer M, Harrison C, Hasselbalch H, and intolerance to hydroxycarbamide in 

Kiladijan JJ, Lengfelder E, Mesa R, Mc Mullin polycythaemia vera and primary 

MF, Passamonti F, Reilly JT, Vannucchi AM, 

Barbui T. 

myelofibrosis: results of a European 

LeukemiaNet (ELN) consensus process. article Br J Haematol. 

Barosi G, Mesa R, Finazzi G, Harrison C, 

Kiladjian JJ, Lengfelder E, Mc Mullin MF, 

Passamonti F, Vannucchi AM, Besses C, Revised response criteria for 

Gisslinger H, Samuelsson J, Verstovsek S, polycythemia vera and essential 

Hoffman R, Pardanani A, Cervantes F, Tefferi thrombocythemia: a ELN and IWG-MRT 

A, Barbui T. 

consensus project. article Blood. 

Barosi G, Tefferi A, Barbui T; ad hoc 

committee ‘Definition of clinically relevant Do current response criteria in classical 

outcomes for contemporarily clinical trials in Ph-negative myeloproliferative 

Ph-neg MPNs’. 

neoplasms capture benefit for patients? article 

Leukemia. 

Béné MC, Nebe T, Bettelheim P, Buldini B, 

Bumbea H, Kern W, Lacombe F, Lemez P, 

Marinov I, Matutes E, Maynadié M, 

Oelschlagel U, Orfao A, Schabath R, 

Solenthaler M, Tschurtschenthaler G, 

Vladareanu AM, Zini G, Faure GC, Porwit A. 

Immunophenotyping of acute leukemia 

and lymphoproliferative disorders: a 

consensus proposal of the European 

LeukemiaNet Work Package 10. review Leukemia. 

Therapeutic drug monitoring of imatinib 

Bouchet S, Titier K, Moore N, Lassalle R, in chronic myeloid leukemia: 

Ambrosino B, Poulette S, Schuld P, Belanger experience from 1216 patients at a 

C, Mahon FX, Molimard M. 

centralized laboratory. 

Buechner, Thomas; Schlenk, Richard F.; 

Schaich, Markus; et al. 

Carobbio, Alessandra; Finazzi, Guido; 

Antonioli, Elisabetta; et al. 

article 

Acute Myeloid Leukemia (AML): 

Different Treatment Strategies Versus a 

Common Standard Arm-Combined 

Prospective Analysis by the German 

AML Intergroup 

article 

Fundam Clin 

Pharmacol. 

Hydroxyurea in essential 

thrombocythemia: rate and clinical 

relevance of responses by European 

LeukemiaNet criteria article BLOOD 

ECIL 3-2009 update guidelines for 

Castagna L, Bramanti S, Sarina B, Todisco E, Ibatici antifungal A, Santoro management. A. 

Castagnetti, Fausto; Testoni, Nicoletta; 

Luatti, Simona; et al. 

Deletions of the Derivative 

Chromosome 9 Do Not Influence the 

Response and the Outcome of Chronic 

Myeloid Leukemia in Early Chronic 

Phase Treated With Imatinib Mesylate: 

GIMEMA CML Working Party Analysis 

article 

article 

JOURNAL OF CLINICAL 

ONCOLOGY 

Bone Marrow 

Transplant. 

JOURNAL OF CLINICAL 

ONCOLOGY 

The European LeukemiaNet AML 

Cornelissen JJ, Gratwohl A, Schlenk RF, 

Sierra J, Bornhäuser M, Juliusson G, Råcil Z, 

Working Party consensus statement on 

allogeneic HSCT for patients with AML in 

Rowe JM, Russell N, Mohty M, Löwenberg B, remission: an integrated-risk adapted 

Socié G, Niederwieser D, Ossenkoppele GJ. approach. review Nat Rev Clin Oncol. 

Cross, N. C. P.; White, H. E.; Mueller, M. C.; 

et al. 

Della Porta et al., 

2010 Mar;148(6):961-3. doi: 

10.1111/j.1365- 

2141.2009.08019.x. Epub 2009 

Nov 23. x x 

2013 Apr 16. [Epub ahead of 

print] x x 

2012 May;26(5):1148-9. doi: 

10.1038/leu.2011.337. Epub 

2011 Nov 22. No abstract 

available. 

x 

2011 Apr;25(4):567-74. doi: 

10.1038/leu.2010.312. Epub 

2011 Jan 21. Review. x x 

2012 Oct 31. doi: 

10.1111/fcp.12007. [Epub 

ahead of print] 

Volume: 30 Issue: 29 Pages: 

3604-3610 DOI: 

10.1200/JCO.2012.42.2907 

Published: OCT 10 2012 


1051-1055 DOI: 

10.1182/blood-2010-03- 

272179 Published: AUG 19 

2010 x 

2012 Jun;47(6):866. doi: 

10.1038/bmt.2011.154. Epub 

2011 Aug 8. x x 


2748-2754 DOI: 

10.1200/JCO.2009.26.7963 

Published: JUN 1 2010 

2012 Oct;9(10):579-90. doi: 

10.1038/nrclinonc.2012.150. 

Epub 2012 Sep 4. Review. x x 


2172-2175 DOI: 

10.1038/leu.2012.104 

Published: OCT 2012 x x 

Standardized definitions of molecular 

response in chronic myeloid leukemia review LEUKEMIA 

Multicentre validation of a reproducible 

flow cytometric score for the diagnosis 

of low-risk myelodysplastic syndromes: 

results of a European LeukemiaNET 

study. article Haematologica.. 2012 Aug;97(8):1209-17 x 

x 

x 

x 

Deschler, Barbara; Ihorst, Gabriele; 

Platzbecker, Uwe; et al. 

Parameters detected by geriatric and 

quality of life assessment in 195 older 

patients with myelodysplastic 

syndromes and acute myeloid leukemia 

are highly predictive for outcome article HAEMATOLOGICA 


208-216 DOI: 

10.3324/haematol.2012.06789 

2 Published: FEB 2013 x 

28


Author(s) 

Title 

Emanuel RM, Dueck AC, Geyer HL, Kiladjian 

JJ, Slot S, Zweegman S, te Boekhorst PA, 

Commandeur S, Schouten HC, Sackmann F, 

Kerguelen Fuentes A, Hernández-Maraver D, 

Pahl HL, Griesshammer M, Stegelmann F, 

Doehner K, Lehmann T, Bonatz K, Reiter A, 

Boyer F, Etienne G, Ianotto JC, Ranta D, Roy 

L, Cahn JY, Harrison CN, Radia D, Muxi P, Myeloproliferative neoplasm (MPN) 

Maldonado N, Besses C, Cervantes F, symptom assessment form total 

Johansson PL, Barbui T, Barosi G, Vannucchi symptom score: prospective 

AM, Passamonti F, Andreasson B, Ferrari ML, 

Rambaldi A, Samuelsson J, Birgegard G, 

Tefferi A, Mesa RA. 

Engelhard D, Mohty B, de la Camara R, 

Cordonnier C, Ljungman P. 

Fabarius, Alice; Leitner, Armin; Hochhaus, 

Andreas; et al. 

Faber, Edgar; Friedecky, David; Micova, 

Katerina; et al. 

Foa, Robin; Vitale, Antonella; Vignetti, 

Marco; et al. 

Giebel S, Thomas X, Hallbook H, Geissler K, 

Boiron JM, Huguet F, Koller E, Jaeger U, 

Smedmyr B, Hellmann A, Holowiecki J. 

Giehl, Michelle; Leitner, Armin; Haferlach, 

Claudia; et al. 

Gökbuget et al., 

Gökbuget N, Hartog CM, Bassan R, Derigs HG, 

Dombret H, Greil R, Hernández-Rivas JM, 

Huguet F, Intermesoli T, Jourdan E, 

Junghanss C, Leimer L, Moreno MJ, Reichle 

A, Ribera J, Schmid M, Serve H, Stelljes M, 

Stuhlmann R, Hoelzer D; German 

Multicenter Study Group for Adult ALL and 

the European Working Group for Adult ALL. 

Type of 

Publication 

international assessment of an 

abbreviated symptom burden scoring 

system among patients with MPNs. article J Clin Oncol. 

If Other, 


European guidelines for prevention and 

management of influenza in 

hematopoietic stem cell transplantation 

and leukemia patients: summary of ECIL- 

4 (2011), on behalf of ECIL, a joint 

venture of EBMT, EORTC, ICHS and ELN. article Transpl Infect Dis. 

Impact of additional cytogenetic 

aberrations at diagnosis on prognosis of 

CML: long-term observation of 1151 

patients from the randomized CML 

Study IV article BLOOD 

Imatinib trough plasma levels do not 

correlate with the response to therapy 

in patients with chronic myeloid 

leukemia in routine clinical setting 

article 

ANNALS OF 

HEMATOLOGY 

Dasatinib as first-line treatment for 

adult patients with Philadelphia 

chromosome-positive acute 

lymphoblastic leukemia article BLOOD 

The prophylactic use of granulocytecolony 

stimulating factor during 

remission induction is associated with 

increased leukaemia-free survival of 

adults with acute lymphoblastic 

leukaemia: a joint analysis of five 

randomised trials on behalf of the 

EWALL. article Eur J Cancer. 

Detection of centrosome aberrations in 

disease-unrelated cells from patients 

with tumor treated with tyrosine kinase 

EUROPEAN JOURNAL 

inhibitors 

article 

OF HAEMATOLOGY 

Recommendations of the European 

Working Group for Adult ALL 

article 

Book, UNI-MED Verlag 

AG, 2011 

Liposomal cytarabine is effective and 

tolerable in the treatment of central 

nervous system relapse of acute 

lymphoblastic leukemia and very 

aggressive lymphoma. article Haematologica. 

International Working Group- 

Gotlib J, Pardanani A, Akin C, Reiter A, 

George T, Hermine O, Kluin-Nelemans H, 

Myeloproliferative Neoplasms Research 

and Treatment (IWG-MRT) & 

Hartmann K, Sperr WR, Brockow K, Schwartz European Competence Network on 

LB, Orfao A, Deangelo DJ, Arock M, Sotlar K, Mastocytosis (ECNM) consensus 

Horny HP, Metcalfe DD, Escribano L, 

Verstovsek S, Tefferi A, Valent P. 

response criteria in advanced systemic 

mastocytosis. article Blood. 

Grimwade, David 

The changing paradigm of prognostic 

factors in acute myeloid leukaemia 

article 

Refinement of cytogenetic classification 

in acute myeloid leukemia: 

determination of prognostic significance 

of rare recurring chromosomal 

abnormalities among 5876 younger 

Grimwade, David; Hills, Robert K.; Moorman, adult patients treated in the United 

Anthony V.; et al. 

Kingdom Medical Research Council trials article BLOOD 

Grimwade, David; Vyas, Paresh; Freeman, 

Sylvie 

Assessment of minimal residual disease 

in acute myeloid leukemia 

review 

BEST PRACTICE & 

RESEARCH CLINICAL 

HAEMATOLOGY 

CURRENT OPINION IN 

ONCOLOGY 

2012 Nov 20;30(33):4098-103. 

doi: 

10.1200/JCO.2012.42.3863. 

Epub 2012 Oct 15. Erratum in: 

J Clin Oncol. 2012 Dec 

20;30(36):4590. Ferarri, Maria 

L [corrected to Ferrari, Maria 

L]. 

Peer-reviewed 



If OA, 

enter 

web 

address 

Funde 

d by 

ELN 

2013 Jan 31. doi: 

10.1111/tid.12054. [Epub 

ahead of print] 

Volume: 118 Issue: 26 

Pages: 6760-6768 DOI: 

10.1182/blood-2011-08- 

373902 Published: DEC 22 

2011 x 


923-929 DOI: 10.1007/s00277- 

011-1394-x Published: JUN 

2012 x 


Pages: 6521-6528 DOI: 

10.1182/blood-2011-05- 

351403 Published: DEC 15 

2011 x 

2012 Feb;48(3):360-7. doi: 

10.1016/j.ejca.2011.11.023. 

Epub 2011 Dec 22. (meeting 

war am 22.11.2012) 


139-148 DOI: 10.1111/j.1600- 

0609.2010.1459.x Published: 

AUG 2010 

x 

Recomm Meeti 


x 

x 

x 

Pubme 

d 

recher 

che 

2011 Feb;96(2):238-44. doi: 

10.3324/haematol.2010.02809 

2. Epub 2010 Oct 15. x 

2013 Mar 28;121(13):2393-401. 

doi: 10.1182/blood-2012-09- 

458521. Epub 2013 Jan 16. x 


419-425 DOI: 

10.1016/j.beha.2012.10.004 

Published: DEC 2012 

x 


354-365 DOI: 10.1182/blood- 

2009-11-254441 Published: 

JUL 22 2010 

x 


656-663 DOI: 

10.1097/CCO.0b013e32833ed 

831 Published: NOV 2010 x 

x 

Gröschel S, Schlenk RF, Engelmann J, 

Rockova V, Teleanu V, Kühn MW, Eiwen K, 

Erpelinck C, Havermans M, Lübbert M, 

Germing U, Schmidt-Wolf IG, Beverloo HB, 

Schuurhuis GJ, Ossenkoppele GJ, 

Schlegelberger B, Verdonck LF, Vellenga E, 

Verhoef G, Vandenberghe P, Pabst T, 

Bargetzi M, Krauter J, Ganser A, Valk PJ, 

Deregulated expression of EVI1 defines 

a poor prognostic subset of MLLrearranged 

acute myeloid leukemias: a 

study of the German-Austrian Acute 

Myeloid Leukemia Study Group and the 

Dutch-Belgian-Swiss HOVON/SAKK 

Löwenberg B, Döhner K, Döhner H, Delwel R. Cooperative Group. article J Clin Oncol. 

Frontline imatinib treatment of chronic 

myeloid leukemia: no impact of age on 

Gugliotta, Gabriele; Castagnetti, Fausto; 

Palandri, Francesca; et al. 

outcome, a survey by the GIMEMA CML 

Working Party article BLOOD 

Guilhot J, Baccarani M, Clark RE, Cervantes F, 

Guilhot F, Hochhaus A, Kulikov S, Mayer J, Definitions, methodological and 

Petzer AL, Rosti G, Rousselot P, Saglio G, statistical issues for phase 3 clinical 

Saussele S, Simonsson B, Steegmann JL, trials in chronic myeloid leukemia: a 

Zaritskey A, Hehlmann R. 

proposal by the European LeukemiaNet. article 

Blood. 

2013 Jan 1;31(1):95-103. doi: 

10.1200/JCO.2011.41.5505. 

Epub 2012 Sep 24. 


Pages: 5591-5599 DOI: 

10.1182/blood-2010-12- 

324228 Published: MAY 26 

2011 x 

2012 Jun 21;119(25):5963-71. 

doi: 10.1182/blood-2011-10- 

383711. Epub 2012 Apr 16. x x 

x 

29


Author(s) 

Haferlach T, Kohlmann A, Wieczorek L, Basso 

G, Kronnie GT, Béné MC, De Vos J, 

Hernández JM, Hofmann WK, Mills KI, Gilkes 

A, Chiaretti S, Shurtleff SA, Kipps TJ, 

Rassenti LZ, Yeoh AE, Papenhausen PR, Liu 

WM, Williams PM, Foà R. 

Hanfstein, B.; Mueller, M. C.; Hehlmann, R.; 

et al. 

Title 

Type of 

Publication 

Clinical utility of microarray-based gene 

expression profiling in the diagnosis and 

subclassification of leukemia: report 

from the International Microarray 

Innovations in Leukemia Study Group. article J Clin Oncol. 

Early molecular and cytogenetic 

response is predictive for long-term 

progression-free and overall survival in 

chronic myeloid leukemia (CML) article LEUKEMIA 

If Other, 


Peer-reviewed 



If OA, 

enter 

web 

address 

Funde 

d by 

ELN 

Recomm Meeti 


Pubme 

d 

recher 

che 

2010 May 20;28(15):2529-37. 

doi: 

10.1200/JCO.2009.23.4732. 

Epub 2010 Apr 20. x x 


2096-2102 DOI: 

10.1038/leu.2012.85 

Published: SEP 2012 

x 

Harrison et al 

Harrison, Christine J.; Hills, Robert K.; 

Moorman, Anthony V.; et al. 

JAK inhibition with ruxolitinib versus 

best available therapy for myelofibrosis. article N Engl J Med. 2012 Mar 1;366(9):787-98. x 

Cytogenetics of Childhood Acute 


Myeloid Leukemia: United Kingdom 

2674-2681 DOI: 

Medical Research Council Treatment 

JOURNAL OF CLINICAL 10.1200/JCO.2009.24.8997 

Trials AML 10 and 12 

article 

ONCOLOGY 

Published: JUN 1 2010 

x 

Hasford, Joerg; Baccarani, Michele; 

Hoffmann, Verena; et al. 

Hehlmann et al. 

Hehlmann, Ruediger; Lauseker, Michael; 

Jung-Munkwitz, Susanne; et al. 

Hengeveld M, Suciu S, Karrasch M, Specchia 

G, Marie JP, Muus P, Petti MC, Rotoli B, 

Amadori S, Fioritoni G, Leoni P, Morra E, 

Thaler J, Resegotti L, Fazi P, Vignetti M, 

Mandelli F, Zittoun R, de Witte T. 

Hirsch HH, Martino R, Ward KN, Boeckh M, 

Einsele H, Ljungman P. 

Iacobucci, Ilaria; Ferrari, Anna; Lonetti, 

Annalisa; et al. 

Iacobucci, Ilaria; Lonetti, Annalisa; Paoloni, 

Francesca; et al. 

Iacobucci, Ilaria; Papayannidis, Cristina; 

Lonetti, Annalisa; et al. 

Kohlmann A, Bullinger L, Thiede C, Schaich 

M, Schnittger S, Döhner K, Dugas M, Klein 

HU, Döhner H, Ehninger G, Haferlach T. 

Kohlmann, A.; Klein, H-U; Weissmann, S.; et 

al. 

Kuehnl, Andrea; Grimwade, David 

Lamoth F, Cruciani M, Mengoli C, Castagnola 

E, Lortholary O, Richardson M, Marchetti O; 

Third European Conference on Infections in 

Leukemia (ECIL-3). 

Lange, Kathrin; Gadzicki, Dorothea; 

Schlegelberger, Brigitte; et al. 

Langerak AW, Davi F, Ghia P, Hadzidimitriou 

A, Murray F, Potter KN, Rosenquist R, 

Stamatopoulos K, Belessi C; European 

Research Initiative on CLL (ERIC). 

Lemez, Petr; Attarbaschi, Andishe; Bene, 

Marie C.; et al. 

Predicting complete cytogenetic 

response and subsequent progressionfree 

survival in 2060 patients with CML 

on imatinib treatment: the EUTOS score article BLOOD 

The European LeukemiaNet: 


686-692 DOI: 10.1182/blood- 

2010-12-319038 Published: 

JUL 21 2011 

achievements and perspectives. article Haematologica. 2011 Jan;96(1):156-62. x x 

Tolerability-Adapted Imatinib 800 mg/d 


Versus 400 mg/d Versus 400 mg/d Plus 

1634-1642 DOI: 

Interferon-alpha in Newly Diagnosed 

JOURNAL OF CLINICAL 10.1200/JCO.2010.32.0598 

Chronic Myeloid Leukemia 

article 

ONCOLOGY 

Published: APR 20 2011 

x 

Intensive consolidation therapy 

compared with standard consolidation 

and maintenance therapy for adults 

with acute myeloid leukaemia aged 

between 46 and 60 years: final results of 

the randomized phase III study (AML 8B) 

of the European Organization for 

Research and Treatment of Cancer 

(EORTC) and the Gruppo Italiano 

Malattie Ematologiche Maligne 

dell'Adulto (GIMEMA) Leukemia 

Cooperative Groups. article Ann Hematol. 

Fourth European Conference on 

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CDKN2A/B Alterations Impair Prognosis 

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The Interlaboratory RObustness of Nextgeneration 

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INTERNATIONAL 

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β-Glucan antigenemia assay for the 

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Matthes-Martin S, Feuchtinger T, Shaw PJ, 

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Michele Baccarani1, Michael W. Deininger2, 

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Dietger Niederwieser18, Fabrizio Pane19, 

Jerald P. Radich20, Philippe Rousselot21, 

Giuseppe Saglio22, Susanne Saussele17, 

Charles Schiffer23, Richard Silver24, Bengt 

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Schrier SL, Tallman M, Grimwade D, Ganser leukemia (APL) outcome in developing 

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Smith, Matthew L.; Hills, Robert K.; 

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Soverini S, Hochhaus A, Nicolini FE, Gruber patients treated with tyrosine kinase 

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Philadelphia-positive acute 

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van de Loosdrecht AA, Ireland R, Kern W, 

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van der Velden VH, Wells DA, de Witte TM, and the European LeukemiaNet Working 

Zettl F, Béné MC, Westers TM. 

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Westers TM, Ireland R, Kern W, Alhan C, 

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Orfao A, Porwit A, Psarra K, Richards SJ, myelodysplastic syndromes: a report 

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