Patient Registries

Patient Registries 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. 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). The JWMDRC Patient Registries Team are proud to announce the creation of our bespoke, next-generation registry software platform ‘PREPARED' ( P atient RE gistry P latform for collection and A nalysis of RE al-world D ata ) . Click here to learn more about the platform , and how to invest in the future of Real-World Data collection by joining our team of industry supporters! Registries coordinated from Newcastle National Registries – ‘ utilising the PREPARED IT platform’: UK FSHD Patient Registry UK Myotonic Dystrophy Patient Registry UK SMA Patient Registry International Registries – ‘utilising the LMU Munich platform’: Global FKRP Registry Myotubular & Centronuclear Myopathy Patient Registry Global Registry for COL6 related dystrophies GNE Myopathy International Patient Registry (currently offline) Registries team Our email address for general enquiries is registries@newcastle.ac.uk . Aleks Carver SMA, FSHD & DM Registry Manager Networking Jessica Moraes Global FKRP & COL6 Registry Manager Networking Julie Bohill MTM-CNM Registry 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 pathway