ERN-RND Registry

ERN-RND registry objectives

  • To establish a demographic platform for collection of relevant core patient information covering 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 standards of care
  • To facilitate participation of patients with the rare neurological diseases covered in the network in clinical trials

Disease Groups covered

  • Ataxia and HSP
  • Leukodystrophies
  • 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 operated at the 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 Providers (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.

ERN-RND registry manual

Contact

If you have any questions, please contact the registry coordinators.