Condition: Shwachman-Diamond Syndrome · Shwachman-Diamond Syndrome-Like · Sponsor: Boston Children's Hospital
Shwachman-Diamond syndrome (SDS) is a genetic condition characterized by bone marrow failure, medical co-morbidities, and leukemia predisposition. SDS-Like patients share clinical features with SDS but lack mutations in known SDS genes. Since SDS/SDS-Like syndromes are rare diseases, data are sparse regarding the clinical features, natural history, clinical outcomes with current management, and treatment. For this reason, the SDS Registry was formed to collect clinical data from medical records and to bank biological samples with the goal of understanding SDS/SDS-Like diseases to develop better treatments and improve the health of patients with these conditions.
This description comes directly from the study's public registry record.
Akiko Shimamura, MD, PhD · akiko.shimamura@childrens.harvard.edu
Karyn Brundige · sdsregistry-dl@childrens.harvard.edu
Always discuss trial participation with your own doctor first.
| Children's Hospital Colorado | Aurora, Colorado, United States | Recruiting |
| Boston Children's Hospital | Boston, Massachusetts, United States | Recruiting |
| Dana-Farber Cancer Institute | Boston, Massachusetts, United States | Recruiting |
| Cincinnati Children's Hospital Medical Center | Cincinnati, Ohio, United States | Recruiting |
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Source record: clinicaltrials.gov/study/NCT06056908