International Patient Registry for Collagen VI Myopathies
Research type
Research Database
IRAS ID
226500
Contact name
Alison Oliver
Contact email
Research summary
International Patient Registry for Collagen VI Myopathies
REC name
Scotland A: Adults with Incapacity only
REC reference
18/SS/0009
Date of REC Opinion
8 Feb 2018
REC opinion
Unfavourable Opinion
Data collection arrangements
The international registry will make the recruitment of Collagen VI myopathy patients 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 VI research community will be supported by the data collected by the registry. In addition, patients with Collagen VI myopathies 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
International Patient Registry for Collagen VI Myopathies
Establishment organisation
Newcastle University
Establishment organisation address
Institute of Genetic Medicine
International Centre for Life
NE1 3BZ