Join the Registry

Register a patient

If you are an independently practicing physician, a member of a small group practice or your institution sees MDS and BMF patients very infrequently; you may wish to register patients on an individual basis. To do so, please follow the directions below:

  • First, download or request an information packet for yourself and your patient. This includes consent forms, teaching sheets, and other information about our registry.
  • Then, discuss participation in our registry with your patient and provide them with a consent form to read over.
  • The research staff at Children’s Hospital Boston will have an additional informed consent discussion with the patient over the phone for which you may be present as well.
  • If the patients agrees to participate he or she should complete our consent form and mail it back to us
  • We will then provide you with research specimen collection kits and pathology kits and assist you with the submission of case information, which includes the transfer of clinical and diagnostic data and pathology specimens. We are available throughout the process to answer any questions you may have.
  • For individual patients, you will not need to complete an IRB approval process in order to participate in the registry.
  • participating study center in the Pediatric MDS and BMF Registry. To do so, please follow the directions below:

  • First, please get in touch with our principal investigator Dr. Inga Hofmann by calling 888-5-PediMDS. You can download our complete physician information packet here.
  • Participation in the Pediatric MDS and BMF Registry will then need to be approved by your institution’s IRB (Institutional Review Board). If your institution does not have an IRB, the IRB at Children’s Hospital Boston as the coordinating study center may act as the IRB of record. We are happy to answer any questions you may have about this process and to assist you as much as possible.
  • Following approval of our study protocol, we will provide your institution with our complete manual of operational procedures, including our protocols and regulations, specimen collection kits and pathology kits.
  • At this point, your institution will officially become a participating center and you will be able to begin enrolling patients. We are available to provide assistance in filling out case report forms for each patient. In the future, we hope to have an online web based data entry system.

Here is a list of current participating study center.

For additional information, please contact the principal investigator Dr. Inga Hofmann by calling 888-5-PediMDS to initiate the process.

Become a study center

If your institution sees multiple MDS and/or BMF patients per year, you may wish to become a