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MGFA Patient Registry in Transition

Thank you for your interest in participating in the MGFA Patient Registry. At this time, the Registry is closed to new enrollment as the site is under construction as we transition to a new platform and database.

 

The MGFA Patient Registry is a confidential means for MG patients to provide information and real patient data that will be useful to medical/research communities in the assessment of disease course, use of various therapies, and estimation of disease costs. In addition, the registry data provides an opportunity for MG researchers to gauge the potential for trial recruitment and to communicate with patients directly about potential research investigations, while respecting their privacy.

 

PLEASE NOTE that the security, safety, and confidentiality of all existing patient data in the Registry is our NUMBER ONE priority during this transition. We are working closely with the University of Alabama Birmingham, as well as medical and academic professionals, to ensure all patient data is strictly protected during this time of transition. Your data will be completely and seamlessly intact in the next version of the Registry and this transition will follow HIPPA regulations concerning data storage.  

 

We hope you plan to contribute your patient data in the near future and we anticipate the Patient Registry being open for new enrollment by July 2022.

 

Please send any questions or inquiries to the MGFA at the following email address: mgfa@myasthenia.org and a representative will get back to you promptly.

A World Without MG