Work with Patient Registries

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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 use it to provide deidentified data reports or study recruitment support to third parties such as pharmaceutical companies and research groups. The registries support 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 seven patient registries coordinated from the JWMDRC currently hold data from a combined total of over 4,300 patients in the following disease areas:

National Registries:

International Registries:

  • Global FKRP Registry

  • GNE Myopathy International Patient Registry

  • Global Registry for COL6 related dystrophies

  • The Myotubular & Centronuclear Myopathy Patient Registry

Meet the team!

Our email address for general enquiries is [email protected]. Alternatively, you can contact us directly:

Helen Walker

Registry Project Manager

Networking

Julie Bohill

Registry Project Manager

Networking

Lindsay Murphy

Registry Project Manager

Networking

Sam McDonald

Registry Project Manager

Networking

What can we offer?

To date the registries have supported over 75 registry enquiries, from academics, healthcare professionals, patient organisations and industry.

  • Assist with the rapid identification of participants for clinical trials
  • Contribute to the understanding of the natural history and epidemiology of specific diseases
  • Provide an interface with the research community, enabling dissemination of relevant and disease-specific information to patients and a two-way flow of information
  • Respond to specific research enquiries from academics, healthcare professionals and industry through data analysis and promotion of research studies or clinical trials
  • Inform the understanding and development of standards of care
  • Collect real world data to inform regulatory pathways and monitor the safety and efficacy of new treatments

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