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MG Patient Registry

The Myasthenia Gravis Patient Registry is an active database of persons with myasthenia gravis (MG), developed for the purposes of research, treatment, and patient information. The Registry is managed by the Coordinating Center of the University of Alabama at Birmingham (UAB) with oversight by the MGFA Patient Registry Committee.

 

 

Learn More About the MG Patient Registry     Join the MG Patient Registry

 

The MG Patient Registry is:

  • For myasthenia gravis research
  • Participant-driven
  • Free to enroll
  • Confidential
  • Open to Adults 18+ in the U.S.

Active and Previously Published Major Studies from Direct MG Registry Patient Data

ACTIVE: RLS and MG - George Washington University study - Abstract presented

ACTIVE: COVID-19 Survey - Ongoing - Abstract submitted

ACTIVE: Longitudinal Analysis of MG data - UCB - Ongoing - Data extracted

ACTIVE: MRG Validation Study - UCB - 2021 start date

ACTIVE: COVID-19 Winter Study - Pending update survey

ACTIVE: MG Diagnostic Delay Survey - Ongoing - Data extracted

ACTIVE: Ocular MG Study - Pending - 2021 summer update survey pending

PUBLISHED: Gender and Quality of Life in MG Patients from MGFA Registry - Muscle Nerve - February 21, 2018

PUBLISHED: Gender Differences in Prednisone Adverse Effects - Neurol Neuroimmunol Neuroinflamm - October 15, 2018

PUBLISHED: Impact of Refractory MG on Health-related Quality of Life - June 20, 2019

PUBLISHED: Employment in Refractory MG - Muscle Nerve - September 3, 2019

PUBLISHED: Examining Impact of Refractory MG on Healthcare Resource Utilization in U.S. - July 15, 2019

PUBLISHED: Cross-sectional Analysis of MG: Disability and Treatment - Muscle Nerve - September 5, 2019

PUBLISHED: Longitudinal Analysis of Disease Burden on Refractory/Nonrefractory Generalized MG - Neuromuscular Dis - September 22, 2020

 

What types of questions are in the enrollment survey?

  • General contact information
  • Demographic information, for example, education, employment status, income, insurance
  • Year, month, and place of birth of parents and grandparents
  • Information on places where you lived when you were under 25 years old
  • MG medical history; including tests and diagnoses, treatments, other conditions, family’s MG history
  • Information on quality of life and lifestyle
  • Future, follow-up surveys will contain a subset of the enrollment questions as well as one new section of questions

 

Join the Registry

 

  • To learn more about the MG Patient Registry, see here.
  • To join the MG Patient Registry, see here.

A World Without MG