International GNE Myopathy Patient Registry
International GNE Myopathy Online Patient Registry: A worldwide initiative to improve the medical knowledge of GNE Myopathy
GNE myopathy (also known as GNEM, Hereditary Inclusion Body myopathy (HIBM), Quadriceps Sparing myopathy (QSM), Distal myopathy with Rimmed Vaculoles (DMRV), Nonaka myopathy or Inclusion Body myopathy type 2 (IBM Type 2)) is an ultra-rare and progressive genetic muscle disease that is not yet fully understood.
Help researchers and doctors learn more about the effects of GNE myopathy by signing up. The GNE Registry is a prospective longitudinal cohort study comprised of online patient-reported data, and data collected during in-clinic visits for those participants residing near an in-clinic study site.
Website:
Email Address:
Address:
John Walton Muscular Dystrophy Research Centre
Institute of Genetic Medicine
Newcastle University
Centre for Life
Newcastle
NE1 3BZ
Language(s) spoken
Primary language
- English
Geographical coverage
- International
TGDOC Membership
- TGDOC Affiliate Member Registry for GNE/HIBM
Data entry
- Patient Entered