Administrative details

Data source ID

37237

Name of data source

The United Kingdom Facioscapulohumeral Dystrophy Patient Registry

Data source acronym

The UK FSHD Patient Registry

Data holder

Data source type

Disease registry

Main financial support

Funds from patients organisations, charity and foundations

Care setting

Hospital outpatient care
Other

Data source qualification

If the data source has successfully undergone a formal qualification process (e.g., from the EMA, ISO or other certifications), this should be described.

No

Data source website

Contact details

Data source regions and languages

Data source countries

Ireland
United Kingdom

Data source languages

English
Data source establishment

Data source established

Data source time span

First collection: 10/05/2013
The date when data started to be collected or extracted.

Publications

Data source publications