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 Dana Farber Boston Children’s Center in Boston, Massachusetts, and Cincinnati Children’s Hospital in Cincinnati, Ohio. The SDSR provides an educational resource for patients, families, and healthcare providers.
Patients can enroll in the registry, free of charge, by contacting the Research Coordinators at Cincinnati Children’s Hospital, Joan Moore at 513-636-8316 or Sara Loveless at 513-803-0460. 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