Global Fukutin Related Protein Registry
| Information | The Global Fukutin Related Protein (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 2I (LGMD2I), and the rarer conditions Congenital Muscular Dystrophy (MDC1C), Muscle Eye Brain Disease (MEB) and Walker-Warburg Syndrome (WWS). 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). |
| Registry Location | International - available to Australians |
| Registry Participation | Voluntary |
| Registry Contact | Registry Coordinator |
| Adding New Patients to Registry | In the Global FKRP Registry this information is both provided by the patient and the professionals involved in the patient’s care after full consent is given by the patient. |
| Please see the website for more information |