MDS Clinical Research Consortium

One of the greatest challenges in research of rare diseases like MDS is having enough patients to conduct meaningful clinical trials. No single center can do it alone.This uniquely collaborative effort overcomes that barrier. To have these six leading MDS research centers working together in this way is unprecedented.

--John Huber, AA&MDSIF Executive Director

The MDS Clinical Research Consortium is an unprecedented, six-institution consortium designed to undertake unique studies and trials to significantly advance treatments and improve outcomes for patients with Myelodysplastic Syndromes (MDS). This five-year, $16 million initiative is sponsored by the Aplastic Anemia & MDS International Foundation (AA&MDSIF) of Rockville, MD, and supported by the Edward P. Evans Foundation.

The Consortium will fill a major gap in MDS-related clinical research in the United States by providing a new “critical mass” of patients and patient data to support the evaluation of promising new compounds, epidemiological studies, and translational studies leading to new classifications, treatments, and procedures. Concurrently, AA&MDSIF will expand its programs for MDS patients, families, caregivers, and local physicians that support and complement the aims and purposes of the Consortium and thus contribute to its impact and success.

Participating programs will be based at U.S. academic medical centers that serve a high volume of MDS patients; that maintain a current and historical patient data base; and that have a current and retrospective MDS patient cohort of sufficient size to have a very significant track record of participation in MDS-related clinical trials.

The programs are located at:

  • Cleveland Clinic Taussig Cancer Institute
  • Dana-Farber Cancer Institute
  • MD Anderson Cancer Center
  • H. Lee Moffitt Cancer Center and Research Institute
  • Weill Medical College of Cornell University
  • Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

Centralized clinical operations (data collection and management, biostatistics, clinical trial accrual, supervision of research protocols) will be based at the Cleveland Clinic Taussig Cancer Institute.

“We are extremely pleased to work in partnership with AA&MDSIF and these six outstanding Consortium members. This collaborative endeavor reflects Mr. Evans’ desire to support the highest quality MDS research which will lead to improve treatment for patients and ultimately to find a cure”, said an Evans Foundation trustee.

The Consortium will be co-chaired by Mikkael Sekeres, MD, MS of the the Cleveland Clinic Taussig Cancer Institute and Guillermo Garcia-Manero, MD of the MD Anderson Cancer Center, who will provide oversight and direct for all scientific matters. The Consortium will be administered by AA&MDSIF.

The Consortium will conduct Phase I and Phase II clinical trials along with pilot studies to identify and confirm new treatments and therapies for MDS.  Working collaboratively to develop and implement a clinical research agenda, the six institutions will then be able to pursue that agenda more rapidly and effectively than has ever been done previously in MDS clinical research.

Each of the six institutions will receive support for a principal investigator, clinical research nurse, data manager, and a clinical research fellow. Known as “Edward P. Evans Fellows”, each fellow will have the opportunity to work, learn, and grow in a truly collaborative environment, and will likely become the MDS clinical research leaders of the future.

We are extremely grateful to the Edward P. Evans Foundation for their vision and support in making the MDS Clinical Research Consortium a reality.  Their support along with the commitment, dedication, and expertise represented by the six Consortium institutions, and the AA&MDSIF, will create a new direction for MDS clinical research, leading to better treatments for MDS patients. This effort is nothing less than revolutionary.