Collaborative MDS research yields world-class results
The following editorial by Ellen Salkeld, Ph.D., senior director of research for the Aplastic Anemia and MDS International Foundation, appeared in MediaPlanet.
Scientists have always been highly competitive, unwilling to share their findings lest a competitor get the edge on them. But what’s recently become publicly recognized is that collaborative research is essential to making significant progress in scientific medicine.
No time for competition
When he was launching his Cancer Moonshot initiative earlier this year, Vice President Joe Biden made a point of remarking about the astonishing lack of a collaborative infrastructure in the current medical research environment.
The need for scientists to hasten the pace of research by joining forces is especially crucial when it comes to rare diseases, for which treatments and funding opportunities are quite limited compared to more common disorders. Though there may be a new appreciation for the value of collective research, at this time it’s hardly what anyone would call an actual culture shift. There is, however, a gleaming example of why this approach deserves to be more widespread.
Promising early results
Gail J. Roboz, M.D.
Consider the three-year old MDS Clinical Research Consortium. Funded by a grant from the Edward P. Evans Foundation, experts in myelodysplastic syndromes (MDS) at six of the nation’s leading medical institutions formed a brain trust for the study, data sharing and treatment of this rare bone marrow disorder that is also a form of blood cancer.
The result has been the production of world-class research that has improved both the care and quality of life for MDS patients at the consortium’s participating institutions, which include Weill Cornell Medicine Leukemia Program in New York, the Cleveland Clinic Taussig Cancer Institute, the Dana-Farber Cancer Center in Boston, MD Anderson Cancer Center in Houston, H. Lee Moffitt Cancer Center and Research Institute in Tampa, and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore.
Why barriers remain
While it’s customary for private industry to closely guard its research data in the fierce competition for potentially lucrative proprietary products, many people are unaware that university-based research operates within the same competitive model. Academic research is heavily protected because its success contributes to the university’s reputation, which in turn impacts its ability to attract and keep top-flight researchers.
U.S.-based researchers vying to make scientific headway often express frustration over the way American scientific and medical research systems and policies operate compared to their European counterparts. But those countries have very different priorities regarding health data and personal privacy laws. Their goal is to achieve more rapid scientific advances, so their systems allow for the liberal sharing of data, which creates larger sets of available data on which studies can be based.
In only three years, the MDS CRC has proven the efficacy of its collaborative research, contributing its significant results to the medical literature on MDS. By extending and enhancing the capacities of each member institution, the consortium has been able to demonstrate that data sharing deserves to be the rule and not just the exception to it.