The team in Newcastle are experienced in the set-up and coordination of neuromuscular registries. A number of national and international registries are managed by the John Walton Muscular Dystrophy Research Centre, collecting data on over 4,500 neuromuscular patients.
Patient Registries
What is a Patient Registry?
The neuromuscular patient registries are a long-established asset of the John Walton Muscular Dystrophy Research Centre (JWMDRC). These longitudinal research databases collect demographic, genetic, clinical and quality of life data on rare and ultra-rare neuromuscular diseases and are used to provide deidentified data reports and study recruitment support to third parties such as academic research groups and pharmaceutical companies.
The registries embody the aims of the JWMDRC by providing valuable data, assisting with patient engagement and recruitment, acting as an interface between patients and the healthcare, scientific and research communities, and ultimately facilitating translational research.
The registries are affiliated with the global neuromuscular network TREAT-NMD. They conform to TREAT-NMD’s internationally standardised core datasets and contribute data to the TREAT-NMD Global Registries Network (TGDOC).
Registries coordinated from Newcastle
Registries team
Our email address for general enquiries is [email protected].
Aleks Carver
Data Coordinator
Clinical Research
Networking
Helen Walker
Registry Project Manager
Networking
Julie Bohill
Registry Project Manager
Networking
Lucy Hickson
Registry Data Coordinator
Networking
Sam McDonald
Registry Project Manager
Networking
The registries aim to work with collaborators to facilitate and accelerate research in neuromuscular conditions by:
- Planning research: The registries can provide information on the number and the location of affected individuals across the world, unlocking a potential cohort beyond the large neuromuscular centres. In addition, they can provide de-identified, aggregate data about specific aspects of the conditions which can be invaluable in assessing the feasibility of a potential study.
- Recruiting for research: The registries can contact affected individuals, against certain eligibility criteria if required, to inform them about research and clinical trial recruitment pathways.
- Conducting research: The registries can be used to conduct research through stand-alone online questionnaires, and can help with analysis and reporting.
All data requests and enquiries are reviewed by each registry’s respective Steering Committee, which is a group comprised of clinical experts, researchers, patient organisation representatives, and affected individuals. Their role is to ensure the registry data is used safely and appropriately.
If you are interested in using our registries please contact us - we encourage applications from any patient, researcher, academic or industry stakeholders working to improve knowledge, understanding, care and treatment in neuromuscular conditions. To support the sustainability of the registries, fees may be applicable for use of registry data.
To date, the registries have supported over 75 registry enquiries, from academics, healthcare professionals, patient organisations and industry.
The collective aims of the neuromuscular disease patient registries are to:
If you are interested in using our registries please contact us - we encourage applications from any patient, researcher, academic or industry stakeholders working to improve knowledge, understanding, care and treatment in neuromuscular conditions. To support the sustainability of the registries, fees may be applicable for use of registry data.
To date, the registries have supported over 75 registry enquiries, from academics, healthcare professionals, patient organisations and industry.
The collective aims of the neuromuscular disease patient registries are to:
- Assist with the rapid identification of participants for clinical trials
- Contribute to the understanding of the natural history and epidemiology of specific diseases
- Inform the understanding and development of Standards of Care
- Respond to specific research enquiries from academics, healthcare professionals and industry through data analysis and promotion of research studies or clinical trials
- Provide an interface with the research community, enabling dissemination of relevant and disease-specific information to patients and a two-way flow of information
- Collect Real World Data to inform regulatory pathways and monitor the safety and efficacy of new treatments