ERN-RND Registry


Establishment and operation of an ERN based patient registry are core activities of all ERNs and lie within the healthcare scope of the ERNs. As such ERN registries have two complementing functions. They are an important component of a digitalised European healthcare and they are drivers of the associated transformation of healthcare.

The ERN-RND registry has been established at University Hospital Tübingen and is being implemented as a REDCap database and meets European requirements and standards including GDPR.

Based on an ERN-RND Data Sharing Agreement, annual datasets of each ERN-RND HCP are being collected. The collected data per patient corresponds to the “Set of common data elements for Rare Diseases Registrationˮ and encompasses a minimal set of data that is pertinent to healthcare.

A Data Access Committee mandated by the ERN-RND Board controls the use of data following an agreed Data Access Policy.


Registry Objectives

  • To collect data on patients seen per Disease Group in ERN-RND
  • To improve the medical care of patients in particular with regard to diagnosis and standards of care
  • To harmonise data on RND patients across the EU to enable addressing key epidemiological, cohort composition, care quality and care resource questions
  • Make data collected in the ERN-RND registry available to researchers, public authorities, industry and other stakeholders
  • To establish RND registries ecosystem based on interoperability and FAIR principles that is facilitated by the European Rare Diseases Registry infrastructure, tools and services

Disease Groups Covered

  • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
  • Chorea & Huntington's disease
  • Dystonia, Neurodegeneration with Brain Iron Accumulation (NBIA) & Paroxysmal Disorders
  • Frontotemporal Dementia
  • Leukoencephalopathies
  • Atypical Parkinsonism: Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP) & Genetic Parkinson's Disease

Data Submission

Every ERN-RND HCP has to submit data of all patients that were seen in one full calendar year in the scope of ERN-RND. This includes patients without a genetically confirmed diagnose.

Deadline for submission is 1 April for the patient seen in the previous year.

Current Template and Manual for data submission 2024 (data of 2023).


In case of questions, please contact Christina Vossler-Wolf, the ERN-RND Registry Project Coordinator.