Cohort study on neurogenetic diseases

Clinical and Paraclinical Characterisation of Neurogenetic Diseases, and Creation of a Hub to Facilitate Translational Research, From Basic to Clinical Research

Not applicable Interventional University Hospital, Bordeaux · NCT06048523

This study is trying to help people with rare inherited brain disorders by collecting health information and samples over three years to improve research and future treatments.

Quick facts

PhaseNot applicable
Study typeInterventional
Enrollment150 (estimated)
Ages6 Years and up
SexAll
SponsorUniversity Hospital, Bordeaux Academic / other
Locations1 site (Bordeaux)
Trial IDNCT06048523 on ClinicalTrials.gov

What this trial studies

This study focuses on neurogenetic diseases, which are rare inherited neurological disorders. It aims to create a centralized approach for facilitating research participation through comprehensive clinical evaluations and the collection of biological samples. Patients with molecularly identified neurogenetic diseases will undergo annual assessments and sample collection to enhance understanding of these conditions and support future therapeutic trials. The study will last for three years and seeks to bridge clinical care and research.

Who should consider this trial

Good fit: Ideal candidates include patients aged 6 years and older with a molecularly identified neurogenetic disease.

Not a fit: Patients who are pregnant, breastfeeding, or have contraindications to lumbar puncture may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved understanding and potential treatments for patients with neurogenetic diseases.

How similar studies have performed: Other studies have shown success in similar approaches, particularly in enhancing the understanding of genetic diseases and facilitating therapeutic developments.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Patient-specific inclusion criteria
* Age ≥ 6 years
* Patient with a molecularly identified NGD

  o Specific inclusion criteria for controls
* For the 10 controls with lumbar puncture (LP): person who performed an LP for medical reasons and who consented to participate in the collection of biological samples
* Age ≥ 18 years
* Person matched in age (+/- 5 years) and sex to adult patient with NGD at the time of collection

Exclusion Criteria:

* Participation in an interventional clinical trial that may interfere with our study
* Refusal of blood collection
* Pregnant and breastfeeding women
* Only for patients performing LP: Contraindication to LP
* Specific non-inclusion criteria for controls: Criterion of a neurodegenerative or inflammatory pathology of the central nervous system

Where this trial is running

Bordeaux

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Genetic DiseaseNervous System DiseasesHubTranslational researchNeurogenetics disordersBiocollection
Last reviewed 2026-06-09 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.