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SDS Registry PDF Print E-mail

SDSF would like to encourage every patient with SDS to register in the

Shwachman Diamond Syndrome Registry. 

The more data that is available to doctors and researchers, the faster they can help with diagnosis, treatments and hopefully a cure!

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What is the SDS Registry (SDSR)?  www.sdsregistry.org
 
Since SDS is a rare disorder, our understanding of the medical complications and best treatments for SDS are limited. For this reason, the SDSR was established to collect medical information and clinical samples on all individuals with SDS across the United States and Canada with the goal of improving diagnosis and treatment. The SDSR is headquartered at the Fred Hutchinson Cancer Research Center in Seattle with a collaborating center in Cincinnati. The SDSR is a research organization dedicated to gathering and analyzing information about SDS and sharing any new knowledge with the SDS community and medical professionals. Scientific studies using collected blood and bone marrow cells will focus on elucidating the causes of SDS and its complications in order to develop better treatments and hopefully a cure.

How can you participate in the SDSR?

There are 2 centers of enrollment. Patients can enroll in the registry by contacting the Registry coordinator or nurse in Seattle at:

Fred Hutchinson Cancer Research Center

University District Bldg.
1107 NE 45th Street, Suite 345
Seattle, WA 98105
206-543-9749 / Toll-free: 1-800-726-4463


Research Nurse  AudreyAnna Bolyard bolyard@u.washington.edu

                               Phone: 206.543.9749
                               Fax: 206.543.3668

 


Or at Cincinnati Children’s Hospital Medical Center

 Research Nurse  Theresa Cole theresa.cole@cchmc.org

Research Study Coordinator  Joan Moore joan.moore@cchmc.org


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.


 

How much will this Registry cost me?

There is no charge to you for your participation in this Registry.

 

Current Registry
Investigators


Akiko Shimamura, MD, PhD (Director)
Fred Hutchinson Cancer Research Center
Seattle Children's Hospital

David Dale, MD
University of Washington

Richard Harris, MD
Cincinnati Children's Hospital

Johanna Rommens, PhD
Hospital for Sick Children, University of Toronto

Stella Davies, MBBS, PhD

Cincinnati Children’s Hospital