Linking up the national registries

Since clinical trials for rare diseases generally have to take place across many centres in many different countries there is a need to link up all of the disease specific national registries. TREAT‑NMD has created  Global Registries for DMD and SMA, whereby all national DMD and SMA registries, respectively, feed into a single global registry.  The Global Registry 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.

In addition, these registries help researchers to answer questions such as how common the individual diseases are across the world and support other activities to improve patient care, such as the assessment of care standards in different countries.

Pharmaceutical companies interested in locating patients for a clinical trial are able to contact the TREAT-NMD Global Registry and request information. This allows companies access to the information they need quickly and efficently.

Patients who may be eligible for a clinical trial will be informed through their own national registry. Patients’ details are never disclosed directly to the companies. If a patient wishes to take part in a clinical trial then they will be asked to contact their local trial site, information for which will be provided on any correspondence from the national registry curator, and not the company.

More information about the global registries – who’s involved and how they operate

Disclaimer: TREAT-NMD is not responsible for any data held in the national or international registries and assumes that all data is true and accurate.