FABRY Disease Registry
The Rare Disease Registry Program (including but not limited to, Gaucher, Fabry, MPS I, and Pompe diseases) is a multi-center, international, longitudinal, observational program that tracks the natural history and outcomes of patients with these rare diseases.
- Sex at Birth: Any
- Age: Child (Birth - 17), Adult (18 - 64), Older Adult (65+)
- Accepting Healthy People: No
- Type: Registry
- Trial Phase: NA
- Conditions Being Studied: Fabry Disease
Study Purpose
Fabry disease is a rare X-linked lysosomal storage disorder that results from mutations in the gene encoding the lysosomal hydrolase, a-galactosidase A (aGAL). This is a research study that collects medical information on people with Fabry disease around the world.
Locations
UH Cleveland Medical Center
11100 Euclid Avenue
Cleveland OH, 44106
- UH IRB: STUDY20200704
- StudyID: 2021-0538
- ClinicalTrials.gov: NCT00196742
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