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Global FKRP Registry

The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the FKRP (Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type R9 (LGMDR9, formerly known as LGMD2I), and the rarer conditions Congenital Muscular Dystrophy (MDC1C), Muscle Eye Brain Disease (MEB) and Walker-Warburg Syndrome (WWS).

The information collected will help with the identification of patients suitable for clinical trials and allow them to participate more easily.

Patients from anywhere in the world can register.

Since patients with FKRP mutations are rare, every single person counts!

If you have Congenital Muscular Dystrophy (CMD) not related to an FKRP mutation, or if the underlying gene mutation is not yet known, please register on the CMD International Registry (CMDIR).

Newsletter (January 2022)
The latest newsletter is now available.
Newsletter (opens in new window)
“It is a wonderful idea. Knowing that there is all this work going on gives us hope for the future.”
Carol and Susan, sisters with LGMDR9

Coordinated by:

The John Walton Muscular Dystrophy Research Centre Newcastle University The Newcastle upon Tyne Hospitals NHS Foundation Trust

Funded by:

LGMD2IFundCureLGMD2i Foundation

Affiliated to: