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European Registry on Rare Neurological Diseases

NCT04319796 · Status: NOT_YET_RECRUITING · Type: OBSERVATIONAL · Enrollment: 5000

Last updated 2021-09-29

No results posted yet for this study

Summary

The recent implementation of European Reference Networks for Rare Diseases (ERNs) is an unprecedented move to improve the care of patients suffering from rare health disorders by transnational collaboration. ERN-RND, the ERN for Rare Neurological Diseases, oversees more than 35,000 patients in 31 specialist centers in 13 countries. The ERN-RND registry aims to gather information on patient cohorts in the multiple specialist centers and to provide an overview on patient numbers principally accessible for translational studies.

Conditions

Interventions

OTHER

Data set as defined by the ERN Research Workgroup of the European Commission

The ERN-RND registry will be restricted to the minimum data set as defined by the ERN Research Workgroup of the European Commission. This includes the following data: * Name of specialist center * Pseudonym: * Date of birth: For confidentiality reasons the ERN-RND registry will restrict this information to the Year of birth * Sex * Date of death: For confidentiality reasons the ERN-RND registry will restrict this information to the Year of death * Age of onset * Orphacode for specific rare disease: https://www.orpha.net/consor/cgi-bin/Disease\_Search.php?lng=DE * Online Mendelian Inheritance in Man (OMIM) code as defined for genetic diseases: https://www.omim.org/ * Human Phenotype Ontology (HPO) terms for key features: https://hpo.jax.org/app/ * Agreement to be contacted for research purposes: Yes/No * Biological samples (Yes / No) * Link to a biobank (Link / No) * Classification of disability (Disease group specific score)

Sponsors & Collaborators

  • University Hospital Tuebingen

    lead OTHER

Principal Investigators

  • Ludger Schöls, Prof. Dr. · University Hospital Tübingen

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2021-10-31
Primary Completion
2025-11-30
Completion
2025-12-31

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Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04319796 on ClinicalTrials.gov