Global Registry for COL6-related dystrophies (V1.0)
Research type
Research Database
IRAS ID
244035
Contact name
Lucy Imber
Contact email
Research summary
Global Registry for COL6-related dystrophies
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
18/NE/0143
Date of REC Opinion
28 Jun 2018
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The international registry will make the recruitment of patients with COL6-related dystrophies for trials/stuidies easier and enable them to be contacted and informed more quickly when there is a trial/study they might be interested in. Clinical information about the patients entered by both themselves and their clinicians will be stored. Data collection will be made online, unless a paper form is requested.
Research programme
The Collagen 6 research community will be supported by the data collected by the registry. In addition, patients with COL6-related dystrophies will be made aware if they match the criteria for trials/studies and will be kept informed about the latest developments, including standards of care relevant to their disease. They will also be provided with up to date information in the form of annual newsletters and email correspondence.
Research database title
Global Registry for COL6-related dystrophies
Establishment organisation
Newcastle University
Establishment organisation address
Framlington Place
Newcastle upon Tyne
NE7 1RU