Global FKRP Patient Registry
The Global FKRP Patient 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 2I (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).
Website:
https://www.fkrp-registry.org/
Email Address:
Secondary Email Address:
Contact Number:
+44 (191) 241 8640
Address:
Newcastle University,
Institute of Genetic Medicine,
International Centre for Life,
Central Parkway,
Newcastle,
UK,
NE1 3BZ
Language(s) spoken
Primary language
- English
Geographical coverage
- International
TGDOC Membership
- TGDOC Affiliate Member Registry for LGMD
- TGDOC Affiliate Member Registry for CMD
Data entry
- Clinician Entered
- Patient Entered