Swiss Patients Registry with Neuromuscular Diseases
What is the Swiss Patients Registry ?
The Swiss Patients Registry (Swiss-Reg-NMD) centralises medical information of patients suffering from a neuromuscular disease. This registry is maintained by swiss doctors in Switzerland.
What is the aim of this swiss registry ?
Lots of progresses have been done in Research in the neuromuscular disease field these recent years. New medications are constantly developed and tested. This registry facilitates the access to clinical trials, in Switzerland and Europe, to patients suffering from neuromuscular diseases.
How many patients suffering from a neuromuscular disease in Switzerland ? Which cares can be given to these people ? Which therapies are efficient ? The registry is aimed to answer those questions and many others. To do so, detailed medical information is collected from medical files (for instance the diagnose, the therapies or the medication). Moreover, questionnaires are sent to concerned families about their needs, their quality of life, school or nutrition. The national evaluation of the data enables the elaboration of proceedings to optimise treatments and a the inclusion of patients suffering from a neuromuscular disease.
The doctor must proceed to data recording. You can contact the Swiss Patient Registry at: firstname.lastname@example.org