Six academic medical centres have set up the first privately funded consortium in the US to focus on clinical trials and research for patients with myelodysplastic syndrome (MDS).

The MDS Clinical Research Consortium is a five-year, US$16 million initiative sponsored by the Aplastic Anemia & MDS International Foundation and supported by the Edward P Evans Foundation.

The participating centres are Taussig Cancer Institute at Cleveland Clinic; Dana Farber Cancer Institute; MD Anderson Cancer Center; H Lee Moffitt Cancer Center and Research Institute; Weill Medical College of Cornell University; and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.

By joining forces, the centres hope to achieve a ‘critical mass’ of dedicated institutions that can support the evaluation of promising new MDS therapies as well as epidemiological and translational studies leading to new treatments and classifications for the disease.

The Consortium will also sponsor an annual dedicated MDS fellowship at each institution.

Enough patients

“One of the greatest challenges in research of rare diseases like MDS is having enough patients to conduct meaningful clinical trials,” noted John Huber, executive director of the Aplastic Anemia & MDS International Foundation.

“No single centre can do it alone,” Huber added. “To have these six leading MDS research centres working together in this way is unprecedented.”

Dr Mikkael Sekeres, director of Taussig Cancer Institute’s leukaemia programme, will co-chair the consortium with Dr Guillermo Garcia-Manero of MD Anderson Cancer Center.

Centralised clinical operations for the consortium (data collection and management, biostatistics, clinical-trial accrual and supervising research protocols) will be housed at Taussig Cancer Institute. The initiative will be administered by the Aplastic Anemia & MDS International Foundation.

Track record

Programmes selected for the consortium will be those based at US academic medical centres serving a high volume of MDS patients; maintaining a current and historical patient database; and with a current and retrospective MDS patient cohort of sufficient size to establish a “very significant” track record of participation in MDS-related clinical trials, Cleveland Clinic noted.

Myelodysplastic syndrome is a cancer of the haematopoietic bone marrow stem cells that inhibits the body’s ability to produce healthy blood cells.