About the Registry

Shwachman-Diamond Syndrome

Since SDS is a rare disorder, limited information is available to guide diagnosis, medical management, and treatment.  To address this gap and improve the health of patients with SDS, the  Registry was established in December of 2008 to collect clinical information and samples from people affected with SDS and their families.  The  SDSR was first headquartered at the Fred Hutchinson Cancer Research Center and later moved to Boston Children’s Hospital in collaboration with Cincinnati Children’s Hospital and Medical Center. Together, we can cure SDS!