UK Facioscapulohumeral (FSHD) Muscular Dystrophy Patient Registry
The UK FSHD Patient Registry is run from Newcastle University by Chiara Marini Bettolo with support from MDUK and in close collaboration with other clinical centres and patient representatives across the country.
The primary goals of the Registry are to facilitate clinical research in FSHD and to allow clinicians and researchers to better understand the condition.
Website:
Email Address:
Secondary Email Address:
Contact Number:
+44 191 241 8640
Address:
The John Walton Muscular Dystrophy Research Centre
Institute of Genetic Medicine
Newcastle University
International Centre for Life
Newcastle upon Tyne
NE1 3BZ
United Kingdom
Language(s) spoken
Primary language
- English (UK)
Geographical coverage
- National
TGDOC Membership
- TGDOC Core Member Registry for FSHD
Data entry
- Clinician Entered
- Patient Entered