What is the SDS Registry (SDSR)?

The Shwachman-Diamond Syndrome Registry (SDSR) is a research organization  dedicated to accelerating research and treatment for SDS to improve survival and quality of life for all patients with the disease. The ultimate goal is to cure SDS!

The SDSR is centered at Boston Children’s Hospital in Boston, Massachusetts and Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio. SDSR is dedicated to sharing new knowledge with patients, families, and healthcare professionals.

Our goals:

  • Promote research focused on understanding, and ultimately curing, SDS
  • Provide education and resources to SDS patients and families
  • Provide education and resources to physicians
  • Promote collaboration among organizations and institutions to improve the lives of patients with SDS
  • Increase awareness of SDS