The DMD Hub Central Recruitment Database
Research type
Research Database
IRAS ID
353263
Contact name
Michela Guglieri
Contact email
Research summary
The DMD Hub Central Recruitment Database
REC name
East Midlands - Derby Research Ethics Committee
REC reference
25/EM/0037
Date of REC Opinion
12 Mar 2025
REC opinion
Favourable Opinion
Data collection arrangements
The DMD Hub Central Recruitment Database (CRD) is a national contact list of children and adults with Duchenne Muscular Dystrophy (DMD) who are interested in participating in clinical research studies (e.g. clinical trials and natural history studies).
Interest in research will be collected and categorised into interventional, natural history or all. This information will be collected at the time of registration as well as name, address and telephone number, date of birth and NHS number. A copy of the genetic report confirming a pathogenic variant in the DMD gene will be collected and stored within the database. In addition, information on steroid use, ambulatory status, and concomitant medication will be collected with the request to update them at least every 6 months.
Participants register themselves and will be asked to consent to take part in this project at the time of registration. Participants answer all of the questions themselves.
Research programme
The DMD Hub Central Recruitment Database (CRD) will build upon the existing infrastructure already developed as part of the DMD Hub Central Recruitment Pilot Project. It will be expanded to ensure an even more equitable access to research studies for patients with Duchenne Muscular dystrophy (DMD), by a more inclusive approach allowing clinicians to discuss the CRD and enrol patients during routine clinical appointments; serve as a resource for industry, academics and clinical trials site to inform clinical trial feasibility and recruitment target; to be able to answer research questions around clinical trial in DMD. Our Aims are: 1 Be an effective tool in facilitating participation in research studies for people living with DMD regardless of their geographical location. 2 Provide fairer and equitable access to clinical research studies for patients with DMD in the UK. 3 Integrate clinical research opportunities in routine clinical care of all patients with DMD in the UK. 4 Serve as a resource for industry, academics as well as clinical trial sites to assess clinical research study feasibility, support setting and define realistic recruitment target and strategies. 5 Address research questions regarding interest in clinical trial participation and how this evolves over time.
Research database title
The DMD Hub Central Recruitment Database
Establishment organisation
Newcastle University
Establishment organisation address
John Walton Muscular Dystrophy Research Centre
International Centre for Life
Newcastle upon Tyne
NE1 3BZ