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Patient Education

What are the TREAT-NMD Global Registries?

key information

source: Treat-NMD

summary/abstract:

New therapeutic strategies for neuromuscular diseases are being developed and some of these treatments will require large studies involving patients from more than one country.  TREAT‑NMD has created a Global Registry for Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA) with trials and development of innovative therapies in mind. Global registries for other conditions are in development.

National DMD and SMA registries feed into a single global registry which combines the information and ensures that patients who register in their national registry can be contacted if their profile fits the criteria for a clinical trial. All national registries that are part of the TREAT-NMD Global Registries collect as a minimum a standardized core set of information that are not only useful for planning clinical trials but also recruiting patients into them.

 

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