Registry Goal

The Pediatric Myelodysplastic Syndrome (MDS) and Bone Marrow Failure (BMF) Registry is funded by the National Institutes of Health (NIH). With the cooperation of patients, families and physicians we aim to create a centralized patient registry and tissue bank for all pediatric MDS and BMF patients. Our team seeks to create a unique platform to accomplish the following goals:

  • Improve the accuracy of diagnosis of these rare conditions by using a standardized diagnostic approach.
  • Build a tissue repository (collection of samples) and database that allows for meaningful clinical data collection to facilitate research.
  • Provide information about these rare disorders to all interested parties.
  • Facilitate basic, translational and clinical research on pediatric MDS and BMF disorders.
  • Ultimately 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.