This web site provides up-to-date information for physicians, health care professionals, patients and their families on pediatric myelodysplastic syndrome (MDS), and inherited and acquired bone marrow failure (BMF) disorders. With the help of patients, families and physicians we hope to collect information on a large number of MDS and BMF cases to better understand the biology of these rare disorders. Download the registry brochure here.
Our ultimate goal is to better define the genetics of pediatric MDS and BMF, identify pathways for therapy and translate this knowledge to improve outcomes for children with these rare diseases.
This web site will provide detailed information about the objectives of the Pediatric MDS and BMF Registry and the services we provide.
Health care professionals will find expert information about the diagnosis and treatment of childhood MDS, myelodysplastic syndrome (MDS), myeloproliferative disorders (MPD), and acquired and inherited BMF. Physicians can send requests to enroll patients in the registry study and will be able to download physician protocols and forms directly from the site.
Patients and families will find general information on myelodysplastic syndromes (MDS) and bone marrow failure (BMF) disorders in easy-to-understand language, and instructions for talking to your child’s doctor about joining the registry.