GNE myopathy registry goes live

Published Date
Beatriz Bustillo Ramirez

The GNE Myopathy International Patient Registry is once again live. If you haven’t yet signed up to it, you can do so now, and if you have signed up for it previously, you can go in and update your records.

The online registry collects data directly from people with GNE myopathy. The data  helps clinicians, researchers, patients and families to understand the condition better. It also helps in recruiting patients for clinical trials and research.

The registry, which researchers at Newcastle University launched in 2014, is available in seven different languages. To date, 350 participants from over 34 countries have signed up and submitted their data.

To join the registry, you must be 18 years of age and have clinically or genetically confirmed GNE myopathy. This condition is also known as hereditary inclusion body myopathy (HIBM), distal myopathy with rimmed vacuoles (DMRV), quadriceps-sparing myopathy (QSM), Nonaka myopathy, or inclusion body myopathy (IBM) type 2.

Lucy Imber, the Registry Co-ordinator, said:

The registry is the only international trial-readiness and communication tool of its kind. We hope it will continue to serve the community during the recruitment for and support of clinical trials, while the search continues for better therapies and improved quality of life for patients with GNE myopathy.

To find out more about the registry, please visit the website here or email the Registry Co-ordinator at

Further information

Read the latest research news on GNE myopathy.

Read our FAQ on patient registries.

If you have any questions about this news story or any other GNE myopathy research, please contact the MDUK Research Line on 020 7803 4813 or email

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