By participating in the registry, patients can benefit from improved medical care through evidence-based treatment plans.
Information on research projects and clinical trials can provide access to innovative therapies, treatments, and medications that may improve quality of life. Additionally, there is the potential for networking and exchanging experiences with other patients. To this end, patients can register their interest in networking with the registry operator.
In a process overseen by the NARSE Data Access Committee, people with similar symptoms are informed of this interest in networking, allowing contact groups to be formed. Further information can be found in the consent documents.