RecruitingOBSERVATIONAL

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

Enroll-HD is a major international study gathering information and biological samples from people who have Huntington's disease (HD), those at risk of getting it, and their family members. This study has no end date and is continuously collecting information each year. By combining data from two previous registries, it now includes over 30,000 participants globally. The goal is to build a detailed collection of health records and samples, which researchers can use to develop ways to track HD, predict its progression, and identify important features of the disease. This also helps design more effective trials for new HD treatments. This valuable resource is open to researchers worldwide to help accelerate understanding and finding treatments for Huntington's disease.

At a glance

Status

Recruiting

Sponsor

CHDI Foundation, Inc.

Enrolment target

35,000

Start

01 Jul 2012

Estimated completion

01 Jan 2062

Huntington's Disease

What is this study about?

Imagine a huge, ongoing research project that brings together information about Huntington's disease (HD) from all over the world. That's exactly what Enroll-HD is! It’s like a central library of knowledge, collecting stories, health details, and even blood samples from thousands of people affected by or related to HD. This study includes people who have HD, those who might get it, and even their family members who don't have the gene. The main idea is to create a complete picture of how Huntington's disease develops and affects people over many years.

Before Enroll-HD, there were two main studies doing similar work, one in Europe and another in North America. Enroll-HD brought them together and expanded even further, now reaching over 150 clinics in 23 countries. Every year, participants share updates on their health, and these details are added to a huge, secure database. This database, along with collected samples, helps scientists look for patterns, indicators of the disease, and better ways to measure its progress.

Why is this so important? Because with a better understanding of HD, researchers can develop new tools to diagnose it earlier, track its changes more accurately, and ultimately, design better studies for new medicines. By making this vast collection of information available to researchers globally, Enroll-HD is speeding up the process of finding effective treatments and improving the lives of people with Huntington's disease.

Key takeaways

Enroll-HD is a large, international study about Huntington's disease (HD).
It collects ongoing health information and blood samples.
It includes people with HD, those at risk, and family members.
The information helps researchers find new ways to understand and treat HD.
It's an observational study, not a treatment trial.

Who may be eligible?

Enroll-HD is looking for a variety of people to take part, specifically those who carry the Huntington's disease (HD) gene, and also people who do not.

If you carry the HD gene, you might be asked to join if you show clear signs of HD (this is called 'manifest HD') or if you carry the gene but don't yet show symptoms ('pre-manifest HD'). They are also interested in family members of people with HD who haven't been tested to see if they carry the gene, or those who have been tested and know they don't carry the gene.

Finally, they are also looking for 'controls' – these are people who are not related to an HD carrier (like partners or caregivers), or even people from the general community who have no family history of HD. These controls help researchers compare information and understand what's typical against what's seen in people with HD.

Quick self-check

Are you 18 years old or older?
Do you have Huntington's disease or carry the gene for it?
Are you a family member of someone with HD, even if you don't carry the gene?
Are you a partner or caregiver of someone with HD?
Are you willing to attend annual clinic visits?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

This study is 'observational,' meaning it gathers information without testing new treatments. If you join Enroll-HD, you'll have annual check-ups at a clinic. These visits will involve discussions about your health, family history, and genetic information. They will also collect blood samples. There's no specific end date for your participation; it's designed to be an ongoing collection of data over many years. You won't be given any new medication as part of this study.

Potential risks and benefits

There are no direct medical benefits for individual participants from joining Enroll-HD, as it's an observational study and doesn't involve new treatments. However, your contribution is invaluable for helping researchers worldwide better understand Huntington's disease, which could lead to future treatments for others. The risks are minimal, mainly involving the short discomfort of blood draws and the time commitment for annual visits. All your personal information will be kept confidential. You are free to withdraw from the study at any time without giving a reason, and this will not affect your routine medical care.

Locations (183)

University of Alabama
Birmingham, United States· Recruiting
St. Joseph's Hospital and Medical Center
Phoenix, United States· Recruiting
University of California - Irvine Medical Center
Irvine, United States· Recruiting
Loma Linda Medical Center
Loma Linda, United States· Terminated
University of California - Los Angeles
Los Angeles, United States· Recruiting
University of California - Davis
Sacramento, United States· Recruiting
University of California - San Diego
San Diego, United States· Recruiting
University of California - San Francisco
San Francisco, United States· Recruiting
Cenexel Rocky Mountain Clinical Research, LLC
Englewood, United States· Recruiting
University of Connecticut
Farmington, United States· Recruiting
Georgetown University
Washington D.C., United States· Recruiting
University of Florida Board of Trustees
Gainesville, United States· Recruiting

+171 more sites — see the official record for the full list.

Common questions

What is the main goal of Enroll-HD?

To collect health information and samples from people with or at risk for Huntington's disease to help researchers worldwide understand the disease better and develop new treatments.

Will I receive any new medication by joining this study?

No, Enroll-HD is an observational study, meaning it only collects information and doesn't involve testing new medications.

How often do I need to visit the clinic?

Participants usually have one visit per year for ongoing assessment.

Who can access my health information?

Your personal details are kept confidential. Researchers worldwide can access the health data in the study's secure database, but it will be anonymised so your identity is protected.

Can I leave the study once I've joined?

Yes, you are free to withdraw from the study at any time without needing to provide a reason.

How to find out more

Noopur Modi

Info@Enroll-HD.org Official trial record

Always speak to your GP or specialist before deciding to take part in a study.