2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

work and to accomplish the work itself. Traditional mechanisms
such as research grants are difficult to qualify for—
projects without a large clinical effect or with limited data
existing have a low chance of competing for funding. Industry
generally sees the market niche as small with little
return on investment. ITMIG has struggled with these
issues but has managed to stay afloat. The work performed
by the ITMIG members, of course, is purely donated time by
physicians, researchers, and other health care professionals
who feel that the opportunity to move forward is simply
something they have to support. Several industry sponsors
have donated unrestricted gifts in what represents primarily
an altruistic gesture. Many related professional organizations
have not only officially endorsed ITMIG but also
have been willing to provide start-up money. The bulk of
funding, however, comes from patients and their families
and friends, most notably from the Foundation for Thymic
Cancer Research.
However, one advantage for a rare disease is that a
relatively small amount of funding can have a substantial
effect precisely because it is a rare disease. This limits the
Author’s Disclosures of Potential Conflicts of Interest
size and cost of the infrastructure needed and promotes
willingness on a broad front for people to volunteer a
manageable amount of time. Maintaining such willingness
broadly and consistently remains a challenge. ITMIG members
are engaged and committed, in part because it is easier
to have a feeling of ownership in a smaller group and
because the effort seems to produce real progress.
Conclusion
Employment or
Leadership Consultant or Stock
Author
Positions Advisory Role Ownership Honoraria
Frank C. Detterbeck I-Flow
1. Mariusdottir E, Nikulasson S, Bjornsson J, et al. Thymic epithelial
tumours in Iceland: incidence and histopathology, a population-based study.
APMIS. 2010;118:927-933.
2. Engel P, Marx A, Müller-Hermelink HK. Thymic tumours in Denmark.
A retrospective study of 213 cases from 1970-1993. Pathol Res Pract. 1999;
195:565-570.
3. Engels EA, Pfeiffer RM. Malignant thymoma in the United States:
demographic patterns in incidence and associations with subsequent malignancies.
Int J Cancer. 2003;105:546-551.
4. dos Santos Silva I, Swerdlow AJ. Thymus cancer epidemiology in
England and Wales. Br J Cancer. 1990;61:899-902.
5. Schwartz A, Kostun L, Henson D. Thymoma and thymic carcinomas: an
analysis of 2,189 cases from the SEER database. Out 4. International Thymic
Malignancy Interest Group (ITMIG) 2 nd Annual Conference. Amsterdam, The
Netherlands. July 7-8, 2011.
474
REFERENCES
Thymic malignancies and other mediastinal tumors represent
rare diseases, in which there has been little progress
over many decades. For a rare disease, it is clear that
progress is only possible if international collaboration can be
achieved. ITMIG represents an organization that is devoted
to making progress in the management of rare diseases
through international collaboration. ITMIG has built an
infrastructure, has engaged a broad multidisciplinary group
of people in a global initiative, and sought novel approaches
to maximize the progress that can be made in improving
outcomes for patients with these orphan diseases.
Research
Funding
Expert
Testimony
FRANK C. DETTERBECK
Other
Remuneration
6. Detterbeck F, Morgensztern D. Progress in outcomes for patients with
Thymoma International Thymic Malignancy Interest Group (ITMIG) 2 nd
Annual Conference. Amsterdam, The Netherlands: July 7-8, 2011 (abstr
02.01).
7. Lilford RJ, Thornton JG, Braunholtz D. Clinical trials and rare diseases:
A way out of a conundrum. BMJ. 1995;311:1621-1625.
8. Detterbeck FC, Parsons AM. Thymic tumors. Ann Thorac Surg. 2004;
77:1860-1869.
9. Huang J, Wang Z, Loehrer P, et al. Standard Outcome Measures for
Thymic Malignancies. J Thorac Oncol. 2010;5:2017-2023.
10. Detterbeck F. ITMIG: A Way Forward. J Thorac Oncol. 2010;5:s365s370
(suppl 4).
11. Gonen M. Bias, Biostatistics & Prognostic Factors. J Thorac Oncol.
2011;6:s1705-s1709 (suppl 3).