LGMD Patient Registry UK
Research type
Research Database
IRAS ID
349955
Contact name
Jordi Diaz Manera
Contact email
Research summary
LGMD Patient Registry UK
REC name
North of Scotland Research Ethics Committee 2
REC reference
24/NS/0141
Date of REC Opinion
17 Jan 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The LGMD Registry is a clinical data collection and storage system for patients diagnosed with LGMD. It aims to aid researchers in understanding the disease's effects over time and develop new treatments. Data is collected during regular clinic visits, including medical and treatment histories, and assessments to monitor muscle health. Retrospective data, including patients' prior clinical data, is also collected. The registry ensures accurate and up-to-date information, allowing researchers and healthcare providers to improve care and treatment options for LGMD patients. It supports the advancement of medical research in the disease.
Research programme
The LGMD Registry is a comprehensive research program aimed at improving the understanding and treatment of LGMD. It will collect longitudinal data on patients, providing a foundation for developing new therapies and improving care practices. The registry will also aid in designing and executing clinical trials by providing a well-characterised group of potential participants, accelerating recruitment and enhancing trial reliability. Beyond research, the registry will serve as a cornerstone of the community engagement strategy, offering patients and families updates on research, treatments, and clinical study opportunities. It will foster a collaborative environment, ensuring that patients' needs and experiences inform ongoing research and healthcare improvements.
Research database title
LGMD Patient Registry UK
Establishment organisation
Newcastle University
Establishment organisation address
Translational and Clinical Research Institute, Faculty of Medical Sciences
International Centre for Life, Central Parkway
Newcastle Upon Tyne
NE1 3BZ