Pediatric Myelodysplastic Syndrome Specialty Care
Pediatric MDS and BMF Registry
How can my child participate in the Pediatric MDS or BMF Registry?
After you have given signed informed consent, we’ll collect information from medical records, laboratory reports and pathology reports with the help of your primary care provider (typically your hematologist oncologist). We collect clinical and research samples for the study when blood, bone marrow or tissue biopsies are obtained during your routine clinical care; this way, we avoid extra needle sticks or procedures.
To join the registry, your child's referring physician should contact our coordinating research nurse Jennifer Braunstein, PNP, and the principal investigator Inga Hofmann-Zhang, MD, PhD, by emailing firstname.lastname@example.org. You may also call us at 617-355-2456 to register your child.
You and your family will receive a consent form and have the ability to ask any questions you have before registering your child. Referring physicians can request a referral packet, which includes instructions on information we need to complete a registration.
Dana-Farber/Children's Hospital Cancer Center is one of the few programs in the country that provides subspecialist pediatric hematopathology services. We offer free-of-charge second opinion pathology review to every patient that has known or suspected MDS or an inherited or acquired BMF disorder and is interested in participating in the registry.
Our pediatric hematopathologist, Mark Fleming, MD, DPhil, will review all diagnostic materials to confirm the diagnosis. Once a final diagnosis is made, the information is entered into our research database.