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This multi-center cohort study by the Primary Immune Deficiency Treatment Consortium (PIDTC) collects medical record information about male patients with Wiskott-Aldrich syndrome, a rare disease that affects the immune system and that can lead to easy bruising, bleeding, and infections. Through data collection and collaboration, researchers hope to determine a more complete picture of the full range of causes, natural history, and the best methods of treatment of Wiskott-Aldrich syndrome.
Subject to certain exclusion criteria, this study collects and reviews medical record and biological information of male patients of all ages who were seen for Wiscott-Aldrich syndrome at PIDTC centers since 1990 and who received or will receive hematopoietic cell transplant (bone marrow transplant) during the study period.
Males: All ages
Participation entails collection of blood and tissue samples from participants and completion of several quality of life questionnaires, which can be accomplished in a single study visit arranged in connection with a regularly scheduled clinic appointment. Information collected is maintained in a non-identifiable manner in the study database.
Duration: Not applicable
National Institute of Allergy and Infectious Diseases
Primary Immune Deficiency Treatment Consortium
Rare Diseases Clinical Research Network
Study Description at National Institutes of Health
Allergy and Immunology Research
Hey Jin Chong, MD, PhD
For more information about the study or enrollment, please contact:
Clinical Research Coordinators
Linette Milkovich, RN
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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