Accessing Registry Data

Data provided to the Registry will assist in helping to optimize the quality of patient care. As a routine service, participating physicians may access summary reports of their own data, as well as aggregate Registry reports. All physician and patient information are confidential. If necessary, patient data that is provided in response to data requests from the overall database will be furnished by patient identification numbers only. Your patient data will remain confidential and will not be released to other physicians without your written approval. No physician to physician data comparisons will be made.

Access to the overall aggregate database is open to the Pompe medical community. Physicians interested in publishing or presenting aggregate Registry data should contact the Pompe Registry staff. These requests will be considered in consultation with the Pompe Registry Advisory Committee according to the Publication Policy for Data from the Pompe Registry. Similarly, analysis proposals should also be submitted for review and approval by the Pompe Registry Staff and the Advisory Board.