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HDClarity: Understanding Huntington's Disease Through CSF Collection

This study, called HDClarity, aims to better understand Huntington's Disease (HD) by collecting samples from at least 2500 people. The main goal is to gather high-quality cerebrospinal fluid (CSF), which is the fluid around your brain and spinal cord, to find markers and pathways that could help develop new treatments for HD. The study also collects blood samples for similar research. You might be able to join if you are between 11 and 75 years old and have HD, or if you are a control participant (without HD) between 18 and 75 years old. This is an observational study, meaning researchers will collect information and samples over time without testing a specific drug. The study's status is currently unclear.

Study design
This is an observational study involving at least 2500 participants. It is a longitudinal study, meaning data will be collected over an extended period.
What's involved
You would attend two annual visits: an Annual Screening Visit and an Annual Sampling Visit. The Annual Sampling Visit involves blood draws and a lumbar puncture (spinal tap) to collect CSF after fasting. Some participants may have an optional repeat sampling visit in their first year.
Compensation
Not stated in the trial record.
Follow-up
Participants are encouraged to complete all annual visits, which occur at regular intervals (1, 2, 3 years, etc.) after the first screening visit. You will be discontinued if you miss three consecutive annual sampling visits.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT02855476

HDClarity: a Multi-site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease

Recruiting
Not specifiedAges 11–75Observational
University College, London
~2,500 participants
Updated 2026-04-27 on ClinicalTrials.gov

At a glance

Recruiting sites
32 of 40 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
The primary objective of this study is:
Measured over years N/A

Conditions

Huntington's Disease

Explore related trials

Huntington's DiseaseHTT Gene

NCT02855476

Where you'd take part

This study runs at 40 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Birmingham Huntingtons Disease Clinic

    Birmingham, West Midlands, United Kingdomstudy coordinator listed

    Recruiting

  • Cambridge University Hospitals NHS Foundation Trust

    Cambridge, United Kingdomstudy coordinator listed

    Recruiting

  • Cardiff University

    Cardiff, United Kingdomstudy coordinator listed

    Recruiting

  • Cenexel

    Englewood, Coloradostudy coordinator listed

    Recruiting

  • Centre Hospitalier Universitaire d'Angers

    Angers, Francestudy coordinator listed

    Recruiting

  • Dresden University

    Dresden, Saxony, Germanystudy coordinator listed

    Recruiting

  • George Huntington Institute

    Münster, Germanystudy coordinator listed

    Recruiting

  • Georgetown University

    Washington D.C., District of Columbiastudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Edward J Wild, MA, MB BChir, MRCP, PhD · PRINCIPAL_INVESTIGATOR · University College, London

Who to contact

Katarzyna Schubert, PhD
[email protected]
Email the study team

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Eligibility criteria

Inclusion

Age (18-75 years controls, early/late premanifest HD and incomplete penetrance HD, 21-75 years early/moderate/advanced manifest HD, ≥11 years juvenile HD)
Enroll HD participant
Capable of consenting or have a legal representative (parent/guardian for juveniles)
Capable of complying with study procedures
All participants other than family and community controls must have had a genetic test for HD

Exclusion

Drug trial within 30 days of any sampling visit
Changes in medication (antidepressant, psychoactive, psychotropic or other medications or nutraceuticals used to treat HD within 30 days)
Antiplatelet or anticoagulant therapy within 14 days
Significant comorbidity
Needle phobia, headache, spinal surgery / deformity
Clotting or bruising disorder
Screening blood test abnormalities \>10% outside normal range
Drug / alcohol abuse
Positive urine pregnancy test at any screening or sampling visit for females of childbearing potential
Predictable non compliance or unwillingness
Serious adverse event related to HDClarity study procedures or any lumbar puncture procedure performed for any reason in the previous 30 days

What this trial measures

  • The primary objective of this study is:years N/A

    To generate a high quality CSF sample collection for evaluation of biomarkers and pathways that will enable the development of novel treatments for HD.