Project name: Homo sapiens

Description: The Pompe Registry is an ongoing, observational database that tracks the natural history and outcomes of patients with Pompe disease. All Pompe disease patients are eligible for enrollment irrespective of their treatment status, and all physicians managing patients with Pompe disease are encouraged to participate in the Pompe Registry.The Pompe Registry provides a repository that enables exchange of information and aggregate data, to facilitate clinical decision making and data reports, as well as serving as a vehicle for collaborative studies.

Data type: other

Sample scope: Multiisolate

Relevance: Medical

Last updated: 2018-07-16