The SDS Registry

The Shwachman-Diamond Syndrome Registry is a unique resource promoting science and discovery to improve the diagnosis and treatment of children and adults with Shwachman-Diamond Syndrome.

The Shwachman-Diamond Syndrome Registry (SDSR) was established to collect medical information and clinical samples from SDS patients and their families to understand the medical complications associated with SDS and to develop better treatments. The SDSR is a collaborative effort currently involving the Fred Hutchinson Cancer Research Center in Seattle, Washington, and Cincinnati Children’s Hospital in Cincinnati, Ohio. The SDSR is working in partnership with the Severe Chronic Neutropenia International Registry, which is also based in Seattle. The SDSR also provides an educational resource for patients, families, and healthcare providers.

Patients can enroll in the registry, free of charge, by contacting the Registry coordinator, Satabdi Chakrabarti at 206-543-9749 (toll-free 1-800-726-4463). After signed informed consent is obtained, the patient or parents (if the patient is a minor) will receive a brief questionnaire which will be updated annually. Additional information is obtained from medical records, laboratory and pathology reports. Clinical samples are obtained when blood, bone marrow or other tissues are being obtained for clinical care, so no extra procedures are involved.

For more information, please visit their website at www.sdsregistry.org

Satabdi Chakrabarti
University District Building
1107 NE 45th Street, Suite 345
Seattle, WA 98105
Phone: 206-543-9749
Toll-free: 1-800-726-4463
Fax: 206-543-3668