Pediatric Myelodysplastic Syndrome Specialty Care
Our Innovative Approach
Currently, very little is known about the cause of MDS. Therefore, no targeted therapies exist and a stem cell transplant is the only curative option.
To gain new insights into the disease and develop new therapies in the future, Dana-Farber/Children's Hospital Cancer Center (DF/CHCC) has launched the nation's first and only comprehensive Pediatric MDS and Bone Marrow Failure (BMF) Registry in collaboration with other centers around the country. We’ve worked closely with our colleagues in the European Working Group of MDS (EWOG-MDS) to establish this registry.
We are also investigating the use of flow cytometry for the diagnosis of myelodyplastic syndromes. Flow cytometry is a type of laboratory test that can be performed on the blood and bone marrow. It is provided through our CAP/CLIA-certified flow cytometry laboratory.
Through the MDS Specialty Care Program, we continue to work towards improved treatments for myelodysplastic syndromes and myeloproliferative disorders.
Pediatric MDS and BMF Disorder Registry
Physicians and research scientists at DF/CHCC manage the Pediatric Myelodysplastic Syndrome (MDS) and Bone Marrow Failure (BMF) Disorder Registry. By creating a centralized patient registry and tissue bank for all pediatric MDS and BMF patients, our team aims to accomplish the following goals:
- improve accuracy of the diagnosis of these rare conditions by using a standardized approach
- build a tissue database that allows for meaningful analysis of clinical outcomes to facilitate research
- use new knowledge gained from these observations to develop consensus among national experts and recommend new treatments
- gain new insights into the causes of MDS and BMF
- All of our patients are invited to participate. By joining the registry, your child is contributing to research that will help future patients. Participation in this patient registry and tissue repository is entirely voluntary.
For information on joining the registry, click here. We are available at any time to answer questions about the registration process and program goals.
If you’re interested in the registry and would like information about the research study, please contact the coordinating research nurse (Jennifer Braunstein, PNP) at 617-355-2456 or email the registry team at firstname.lastname@example.org.
For more information about the registry visit PediMDS.org.