ERN-RND registry objectives
- To establish a demographic platform for collection of relevant core patient information (children and adults)
- To collect information on how many patients per Disease Group covered by ERN-RND are treated across Europe
- To improve the medical care of patients in particular with regard to diagnosis and signposting to existing natural history registries
- To facilitate participation of patients with the rare neurological diseases covered in the network in clinical trials
- To help optimize and monitor the quality of patient care
Disease Groups covered
- Ataxia and HSP
- Frontotemporal Dementia
- Dystonia, Paroxysmal Disorders & NBIA
- Atypical Parkinsonism
- Huntington’s Disease & Choreas
ERN-RND registry pilot phase
The ERN-RND Registry is currently being developed using the RedCap database platform that is being operated at University Hospital Tübingen, Hertie Institute for Clinical Brain Research. The registry will undergo a phase of intense iterative pilot testing with the help of a defined number of ERN-RND Healthcare Professionals (HCPs) who will serve as test users by submitting data. Improvements will be implemented according to the experience collected thereby.
We plan to roll-out the registry to all ERN-RND HCPs (full members and affiliated partners) in 2022.
Please note that this webpage is under construction and that more information will be provided in due course.