Actively Recruiting
HDClarity: A Multi-site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease
Led by University College, London · Updated on 2026-04-27
2500
Participants Needed
40
Research Sites
N/A
Total Duration
On this page
Sponsors
U
University College, London
Lead Sponsor
C
CHDI Foundation, Inc.
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are conducting a long-term observational study called HDClarity to collect cerebrospinal fluid (CSF) and plasma samples from at least 2,500 participants at various stages of Huntington's disease (HD). The main goal is to gather high-quality CSF samples to study biomarkers and disease pathways that may help develop new treatments for HD. Additionally, plasma samples will be collected to support biomarker research relevant to HD. Participants attend two annual visits: a Screening Visit and a Sampling Visit. The Screening Visit involves collecting medical history and clinical data. Those eligible and willing continue to the Sampling Visit, where blood is drawn via venipuncture and CSF is collected through lumbar puncture after fasting for at least six hours or overnight. Some participants may also attend an optional Repeat Sampling Visit 4-8 weeks after the first Sampling Visit during their first year of enrollment. Annual visits continue regularly with a two-month window. Throughout the study, participants' health and clinical status are monitored, with the option to skip visits without leaving the study. If a participant misses Sampling Visits for three consecutive years, they may be discontinued but can re-enroll later with consent. The study collects detailed clinical and phenotypic data alongside biological samples to evaluate biomarkers and pathways related to HD, supporting therapeutic development. The study is open-ended and ongoing.
CONDITIONS
Brief Title
HDClarity: a Multi-site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Age 11 to 75 years (varies by participant group)
- Diagnosed with Huntington's disease or at genetic risk
- Able to provide informed consent or have a legal representative
- Able to comply with study procedures
- Genetic testing for Huntington's disease required except for family and community controls
You will not qualify if you...
- Participation in a drug trial within 30 days of sampling
- Changes in medications used to treat Huntington's disease within 30 days
- Use of antiplatelet or anticoagulant therapy within 14 days
- Significant other medical conditions
- Needle phobia, headache, spinal surgery, or spinal deformity
- Bleeding or bruising disorders
- Abnormal blood test results exceeding 10% outside normal range
- Drug or alcohol abuse
- Positive pregnancy test for females of childbearing potential at any visit
- Unwillingness or predictable noncompliance
- Serious adverse event related to lumbar puncture or study procedures in past 30 days
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - 1 day
Participants attend an annual visit to provide medical history and clinical data to determine eligibility for sampling.
1 visit per year
Duration - 1 day
Participants who meet eligibility criteria return for biosample collection including blood and cerebrospinal fluid after fasting.
1 visit per year
Duration - 1 day
Some participants may attend an optional additional sampling visit 4 to 8 weeks after their first Annual Sampling Visit during the first year.
1 optional visit during the first year
Duration - Multiple years
Participants are followed with annual visits for ongoing clinical and biosample assessments over multiple years.
Annual visits at regular intervals (± 2 months)
Trial Site Locations
Total: 40 locations
1
Cenexel
Englewood, Colorado, United States
Actively Recruiting
2
Georgetown University
Washington D.C., District of Columbia, United States, 20057
Actively Recruiting
3
John Hopkins University
Baltimore, Maryland, United States, 21287
Actively Recruiting
4
Wake Forest University
Winston-Salem, North Carolina, United States, 27109
Completed
5
Vanderbilt University Medical Center
Nashville, Tennessee, United States, 37212
Actively Recruiting
6
University of Texas Health Science Center
Houston, Texas, United States, 77030
Actively Recruiting
7
University of British Columbia, The Centre for Huntingtons Disease
Vancouver, British Columbia, Canada, V6T 2B5
Active, Not Recruiting
8
The Ottawa Hospital
Ottawa, Ontario, Canada, K1Y 4E9
Actively Recruiting
9
North York General Hospital
Toronto, Ontario, Canada, M2K 1E1
Actively Recruiting
10
Centre for Movement Disorders
Toronto, Ontario, Canada, M3B 2S7
Completed
11
Centre Hospitalier Universitaire d'Angers
Angers, France, 49000
Actively Recruiting
12
Le Centre Hospitalier Universitaire de Bordeaux
Bordeaux, France, 33076
Actively Recruiting
13
University Hospital Ulm
Ulm, Baden-Wurttemberg, Germany, 89081
Actively Recruiting
14
Dresden University
Dresden, Saxony, Germany, 01307
Actively Recruiting
15
St Josef And Elisabeth Hospital
Bochum, Germany, 44791
Actively Recruiting
16
University Hospital of Erlangen
Erlangen, Germany, 91054
Actively Recruiting
17
George Huntington Institute
Münster, Germany, 48149
Actively Recruiting
18
Kbo-Isar-Amper-Klinikum Taufkirchen (Vils)
Taufkirchen, Germany, 84416
Actively Recruiting
19
Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta
Milan, Italy, 20133
Active, Not Recruiting
20
Lega Italiana Ricera Huntington
Rome, Italy, 00185
Actively Recruiting
21
The University of Auckland
Grafton, Auckland, New Zealand, 1023
Actively Recruiting
22
NZ Brain Research Institute
Christchurch, Canterbury, New Zealand, 8011
Actively Recruiting
23
Institute of Psychiatry and Neurology
Warsaw, Poland, 02-957
Active, Not Recruiting
24
Gulbenkian Institute of Molecular Medicine
Lisbon, Portugal, 1649-028
Actively Recruiting
25
Cruces University Hospital
Bilbao, Biscay, Spain, 48903
Active, Not Recruiting
26
Hospital de Sant Pau
Barcelona, Spain, 08041
Actively Recruiting
27
Ramón y Cajal Universitary Hospital
Madrid, Spain, 28034
Actively Recruiting
28
Royal Devon & Exeter NHS Foundation Trust
Exeter, Devon, United Kingdom, EX2 5DW
Actively Recruiting
29
Glasgow Clinical Research Facility
Glasgow, Scotland, United Kingdom, G51 4TF
Actively Recruiting
30
Birmingham Huntingtons Disease Clinic
Birmingham, West Midlands, United Kingdom, B15 2 FG
Actively Recruiting
31
North Bristol NHS Trust
Bristol, United Kingdom, BS10 5NB
Active, Not Recruiting
32
Cambridge University Hospitals NHS Foundation Trust
Cambridge, United Kingdom, CB2 0PY
Actively Recruiting
33
Cardiff University
Cardiff, United Kingdom, CF24 4HQ
Actively Recruiting
34
Fife Health Board - Whyteman's Brae Hospital
Kirkcaldy, United Kingdom, KY1 2ND
Active, Not Recruiting
35
Leeds Teaching Hospital Trust
Leeds, United Kingdom, LS7 4SA
Actively Recruiting
36
The Walton Centre NHS Foundation Trust
Liverpool, United Kingdom, L9 7LJ
Actively Recruiting
37
University College London Hospitals NHS Foundation Trust
London, United Kingdom, NW1 2PG
Actively Recruiting
38
St George's University Of London
London, United Kingdom, SW17 0RE
Actively Recruiting
39
Oxford University Hospitals NHS Foundation Trust
Oxford, United Kingdom, OX3 9DU
Actively Recruiting
40
University Hospitals Plymouth NHS Trust
Plymouth, United Kingdom, PL6 5FP
Actively Recruiting
Research Team
K
Katarzyna Schubert, PhD
G
Gail Owen, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
8
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