Bone Marrow Failure Disease Research Consortium

About the Bone Marrow Failure Disease Consortium

BMFDC Patient Contact Registry

About the Bone Marrow Failure Disease Consortium

The National Institutes of Health (NIH), through its Office of Rare Diseases, has awarded a $4.5 million research grant to the Bone Marrow Failure Disease Consortium (BMFDC). This group of expert physicians and researchers are addressing challenges in diagnosing and treating bone marrow diseases. These authorities in treating bone marrow disorders are holding clinical studies at four centers of excellence across the US, to find advances in treatment options for patients. The BMFDC functions under the umbrella of the NIH's Rare Diseases Clinical Research Network (RDCRN).

The BMFDC is studying:

aplastic anemia
myelodysplastic syndromes
paroxysmal nocturnal hemoglobinuria
single lineage cytopenias such as large granular lymphocyte leukemia and pure red cell aplasia.

Another important goal of the BMFDC is to enhance the availability, accessibility, and quality of information offered to patients and health care professionals. To coordinate efforts in this area, AA&MDSIF serves as a clearinghouse for patient education about clinical research studies and for information about current advances in research. For this role, the AA&MDSIF draws upon its wide reach and extensive information resources as a patient advocacy group focused on bone marrow disorders.

The locations of the BMFDC's clinical centers are:

Penn State - Milton S. Hershey Medical Center in Pennsylvania
H. Lee Moffitt Cancer Center and Research Institute in Florida
Cleveland Clinic in Ohio
University of California at Los Angeles Medical Center in California

Each location has a study coordinator who can give you more information about the specific studies they are conducting and discuss your eligibility with you.

To receive contact information for the Bone Marrow Failure Disease Consortium and to learn more about clinical research studies and the risks and benefits of participation, please call the AA&MDSIF staff at 410.867.0242 or 800.747.2820 or email clinicaltrials@aamds.org.

BMFDC Patient Contact Registry

The BMFDC created a Patient Contact Registry where patients and their families can sign up to be contacted in the future about clinical research opportunities. Every patient who is considering participating in a clinical study may want to explore this opportunity.

Join the BMFDC Patient Contact Registry by:

mailing or faxing the attached form
calling 866.313.9879 and registering using the telephone automated system
visiting http://rarediseasesnetwork.epi.usf.edu/bmfdc/index.htm and completing the online registration form (click Join the Contact Registry)

If you have questions or would like to discuss the BMFDC Contact Registry, please call the AA&MDSIF staff at 410.867.0242 or 800.747.2820 or email clinicaltrials@aamds.org.

Click here to learn more about the Bone Marrow Failure Diseases Consortium.

^{Last Modified: December 20, 2007}