Mid-term report 2013 - The European LeukemiaNet

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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 2
European LeukemiaNet Midterm Report, 08-RNP-071 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. 3
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Mid-term report 2013 - The European LeukemiaNet

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