Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases.

ABSTRACT:

Background

Patient involvement in research increases the impact of research and the likelihood of adoption in clinical practice. A first step is to know which research themes are important for patients. We distributed a survey on research priorities to ERN-RND members, both patient representatives and healthcare professionals, asking them to prioritize five research themes for rare neurological diseases on a scale ranging from 1 (most important) to 5 (least important). A follow-up e-mail interview was conducted with patient representatives and professionals to assess potential reasons for differences in opinions between these two groups.

Results

In total, 156 responses were analysed: 61 from professionals and 95 from patient representatives. They covered all ERN-RND disease

SUBMITTER: Post AEM 

PROVIDER: S-EPMC7976714 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature