Why join

As a healthcare provider, there are many advantages to joining the Pediatric MDS and BMF Registry. We offer:

  • A center for collaboration among professionals who are interested in MDS and BMF
  • Access to a comprehensive registry of patient data and tissue samples
  • Centralized and standardized second opinion pathology review by an expert pediatric hematopathologist of any diagnostic and follow up material for patients with known or suspected/potential MDS or BMF disorder (without charge)
  • Ability to store patient data in state-of-the-art database maintained by Children’s Hospital Boston’s Clinical Research Program staff at no cost
  • Free specimen collection kits and specimen shipment,
  • Storage of patient research samples in a state-of-the-art storage facility with computerized specimen inventory tracking at Children’s Hospital Boston at no cost
  • Free marketing and patient recruitment materials
  • Access to all protocol and consent documents, available for download here
  • An established connection with EWOG-MDS (Charlotte Niemeyer)
  • The overarching goal of our Registry is to facilitate collaboration and advance scientific understanding of MDS and BMF. Our operating principles are designed with these goals in mind:

  • We collect samples from both MDS and BMF to maximize the value of the Registry
  • All investigators have access to tissue samples
  • Participating institutions will have preferred rights for sample access
  • Each sample request will get a fair and speedy review by the steering committee with representation of various participating institutions
  • Written agreements about data sharing and authorship rights will be established in advance