What is a patient registry?
A patient registry collects information about patients who are affected by a particular condition, such as Duchenne muscular dystrophy.
They are an essential tool for researchers and care providers, as they contain genetic and clinical data as well as patient contact information.
It is very important to collect precise genetic information about the mutation which causes a patient’s disease, as many promising areas of research into Duchenne treatment are aimed at very specific genetic mutations. International collaboration between registries is crucial, as specific mutations are sometimes very rare.
This allows them to be used to quickly reach patients and provide them with relevant information, allow recruitment into clinical trials, and enable researchers to better understand the prevalence, epidemiology and natural history of Duchenne.
CARE-NMD and Patient Registries
CARE-NMD aims to increase the recruitment of patients in the national patient registries of Associated Partners, in order to reach out to as many patients as possible to promote high quality Duchenne care.
This will allow up-to-date information on Care Standards and the latest research developments to be distributed as widely as possible, and allow patients and their families to provide feedback to the project on the quality of care they are experiencing.
If you are a patient or family, registering in your national patient registry is very important: it will let you receive up-to-date information about Duchenne care and the latest research developments.
You will also be able to tell CARE-NMD about the availability and quality of care you receive – and help to identify what additional training is needed. This will help to improve the care available to you and other Duchenne patients in your country, so please consider registering.
For other DMD registries worldwide see also the complete listing on the TREAT-NMD website.
If you are aware of any mistakes, or of any Duchenne registries which are missing from this list, please get in touch.