Shwachman Diamond Project - Supporting research into treatments and a potential cure for Shwachman Diamond Syndrome.
Shwachman Diamond Project Ltd. was established in 2005 as a 501(c)3 charitable organization with a mission of fund raising to support research into treatments and a potential cure for Shwachman Diamond Syndrome and other bone marrow failure syndromes. In keeping with this mission, the organization works to encourage cord blood collection and funds research projects related to this area.
Since its inception, SDP has funded many research projects, including the development of The Shwachman-Diamond Syndrome Registry at the Fred Hutchinson Cancer Research Center in Seattle, Washington.
For interest in obtaining funding for research, please review our simplified Grant Request.
The Shwachman-Diamond Syndrome Registry
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
Together we can make a difference
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 [...]
How To Help
The success of the Shwachman Diamond Project critically depends on funding support. If you are interested in donating, your contributions are tax-deductible and can be processed online using a PayPal account or credit card.
Understanding Shwachman-Diamond Syndrome
Clinical Characteristics of Shwachman-Diamond Syndrome Copyright: This article is a publication of the Communications Committee of Shwachman-Diamond Canada. It has been edited for medical accuracy by members of the Medical Advisory Board. This article may be copied and distributed provided it is distributed in its entirety. Individual sections should not be abstracted and distributed out-of-context. [...]
