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.

Contact

If you have any questions, please contact the registry coordinator Dorotea Lleshaj.