What is this study trying to find out about Huntington's disease?

This study aims to collect detailed clinical and biological data from people with Huntington's disease, those at risk, and controls to better understand disease progression and symptoms. Researchers want to develop tools and markers to track and predict HD outcomes. The CHDI Foundation supports this global research effort to improve future treatments.

Who may be eligible for this Huntington's disease clinical trial?

Adults aged 18 or older who have or may have the Huntington's disease gene mutation, as well as family members and community controls, may be eligible. People with major nervous system disorders or negative HD gene test results may not qualify. Please review eligibility criteria for more details.

Is there any cost to participate in this Huntington's disease clinical trial?

Study-related care, including assessments and sample collection, is provided at no cost. However, personal travel or other expenses to attend visits may not be covered. Participants should plan accordingly for any costs associated with attending study visits.

Actively Recruiting

Age: 18Years +

All Genders

Healthy Volunteers

ID01574053

Enroll-HD A Prospective Registry Study in a Global Huntingtons Disease Cohort

Led by CHDI Foundation, Inc. · Updated on 2024-02-28

35000

Participants Needed

183

Research Sites

N/A

Total Duration

AI-Summary

What this Trial Is About

Researchers are conducting Enroll-HD, a large, ongoing observational study that combines and expands previous Huntingtons disease HD registries across multiple continents, including Europe, North America, Australasia, and Latin America. This study collects longitudinal clinical data and biological samples from individuals with manifest HD, those carrying or at risk of carrying the HD gene mutation, and control participants without the mutation. The goal is to build a rich database to support research into disease progression, prognosis, and developing clinical trial endpoints. Participants include those with diagnosed HD, pre-manifest carriers, relatives with unknown or negative genotype status, family controls, and community controls. The study involves annual assessments with no planned end date, allowing for long-term data collection. Researchers collect demographic, clinical, family history, genetic, and blood sample information systematically from over 150 sites worldwide. During the study, participants undergo motor, functional, behavioral, and cognitive assessments using standardized tools such as the Unified Huntingtons Disease Rating Scale and Problem Behaviors Assessment-Short. Data are updated at each visit, including clinical signs and genotyping results. The study database is periodically made available to researchers globally, and participants may contribute for many years, helping to advance understanding and support future interventional studies in HD.

CONDITIONS

Brief Title

Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort

Who Can Participate

Age: 18Years +

All Genders

Healthy Volunteers

Eligibility Criteria

You may qualify if you...

Individuals who carry the Huntington's disease gene expansion mutation
Individuals who do not carry the Huntington's disease expansion mutation (controls)
Manifest or motor-manifest HD diagnosed by a healthcare provider
Pre-manifest or motor-manifest HD carriers without diagnostic clinical features
First or second degree relatives with unknown or negative genotype status
Family members or unrelated individuals such as spouses or caregivers
Individuals 18 years of age or older (participants under 18 with juvenile-onset HD may also be eligible)

You will not qualify if you...

Individuals who do not meet inclusion criteria
Individuals with choreic movement disorders who test negative for the HD gene mutation
Community controls with major central nervous system disorders like stroke, Parkinson's disease, or multiple sclerosis
Participants under 18 years old without juvenile-onset HD

Research Team

Noopur Modi

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