GNEM Disease Monitoring Program


GNE Myopathy (GNEM) is also known as: Hereditary Inclusion Body Myopathy (HIBM), Quadriceps-Sparing Myopathy (QSM), Distal Myopathy with Rimmed Vacuoles (DMRV), Nonaka Myopathy, and IBM Type 2.

It is a rare, adult-onset, progressive muscle disease with many unanswered questions. More information is needed to better understand how this disease affects people and progresses over time.


  • The GNEM Disease Monitoring Program (GNEM-DMP) is a way to understand how GNEM affects you and others to help guide researchers so that potential treatments can be developed as fast as possible
  • There are two ways to get involved in the GNEM-DMP: the patient-reported part, or online registry; and the physician-reported part, or natural history study
  • Even if you are participating in another registry, natural history study or clinical trial, you can still participate in the GNEM-DMP
Registry Location International - available to Australians
Registry Participation Voluntary
Registry Contact

GNEM-DMP Coordinator
T: 0191 241 8905 (if calling from UK)

+44 191 241 8905 (international callers)


Adding New Patients to Registry

Why should I sign up?
Every patient counts. Every answer counts. With global patient participation in the GNEM-DMP, we can meet the following goals:

  • To help you track your health, you will be able to download reports in the future to find out how you are doing and, if you choose to, compare yourself to the group of other anonymous people with GNEM in the database
  • To help physicians better manage their patients by understanding more about how GNEM affects the body and quality of life over time
  • To help researchers design clinical trials more quickly and develop potential treatments
  • To help improve the standard of care for all people with GNEM


Who Can Participate?
To participate in the online registry part of the GNEM-DMP, you must:

  • Be 18 years or older
  • Have a diagnosis of GNEM (also known as HIBM, DMRV, QSM, Nonaka Myopathy or IBM Type 2)
  • Be willing to provide electronic consent to provide your medical information
Please see the website for more information