Decades-Long mystery: researchers map rare disease in closed communities
NCT ID NCT03159026
Summary
This study aimed to understand the long-term health effects of a rare, inherited form of propionic acidemia found in Amish and Mennonite communities. Researchers reviewed the lifelong medical records of 38 known patients with this specific genetic variant. The goal was to gather information to create better, evidence-based care plans, especially for managing potential heart problems.
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Contacts and locations
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Locations
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Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, 15224, United States
Conditions
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