If your child has been diagnosed with MDS or a bone marrow failure disorder, you may be interested in joining our registry. Please note that participation in the registry must be coordinated through your child’s physician or a participating study center.

If you are interested in joining the registry, you should first print out the patient information packet and bring them to your referral physicians for discussions.

Your child’s referring physician should contact our coordinating research nurse Jennifer Braunstein, PNP, and our principal investigator Dr. Inga Hofmann by emailing or calling (608) 263-6420.

Once you’ve discussed the registry with your child’s physician and with our research staff, you may complete the consent form and mail it to us at:

Pediatric MDS and BMF Registry
Children's Hospital Boston
Department of Hematology
Fegan 7
300 Longwood Avenue
Boston, MA 02115 USA

When we have your paperwork on file, we will coordinate with your child’s physician to collect the necessary information and enroll your child in the registry.