Current Studies

HD Families
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Current Studies

Get Involved

Current studies

These studies associated with the Enroll-HD platform are, or soon will be, recruiting participants. Most of these studies are recruiting people who are already participating in Enroll-HD.

If you are interested in getting involved in any of these studies, please visit the Study Sites page to find a site near you and contact the study coordinator listed for that site.

Study sites

Find an HD study site near you.

Taking part: FAQs

More information on taking part in HD studies.

GET INVOLVED

Current Studies

If you are interested in getting involved in any of these studies, please visit the Study Sites page to find a location near you and contact the study coordinator listed.

Enroll-HD

Enroll-HD is the world’s largest observational study for Huntington’s disease families. It monitors how the disease appears and changes over time in different people in a real-world setting.

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HDClarity

HDClarity is the largest ongoing study collecting cerebrospinal fluid (CSF) in HD.

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imageClarity

imageClarity is a neuroimaging study that will generate a high-quality MRI dataset to help researchers identify imaging markers of disease progression, which can later be used to evaluate the effectiveness of novel treatments.

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iMagemHTT-009

iMagemHTT-009 is using two different brain imaging techniques - PET and MRI - to evaluate the ability of a new imaging ‘tracer’ to measure levels of mutant huntingtin in the brain.

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iMarkHD

iMarkHD is an adaptive longitudinal PET and MRI study in HD assessing molecular, functional, and structural changes in the brain from several years before symptom onset to advanced stages.

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LSA

The Later Stage HD Assessment (LSA) study is evaluating two common HD assessments that have been adapted for telephone interview by a clinician that will be completed on behalf of the patient by their caregiver to evaluate people in the mid- to later-stages of HD.

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Enroll-HD

Enroll-HD is the world’s largest observational study for Huntington’s disease families. It monitors how the disease appears and changes over time in different people in a real-world setting.

Learn More

HDClarity

HDClarity is the largest ongoing study collecting cerebrospinal fluid (CSF) in HD. The study is sponsored by University College London, UK (UCL) and is funded and supported by the CHDI Foundation.

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ImageClarity

imageClarity is a neuroimaging study that aims to generate a high-quality MRI dataset to help researchers identify imaging markers of disease progression, which can later be used to measure the effectiveness of novel treatments.

Learn More

iMagemHTT-009

iMagemHTT-009 is using two different brain imaging techniques - PET and MRI - to evaluate the ability of a new imaging ‘tracer’ to measure levels of mutant huntingtin in the brain.

Learn More

iMarkHD

iMarkHD is an adaptive, longitudinal positron emission tomography (PET) and magnetic resonance (MR) imaging study in Huntington’s disease that aims to assess molecular, functional, and structural changes in the brain from several years before symptom onset to later stages where more advanced symptoms are observed.

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LSA

The Later Stage HD Assessment (LSA) study is evaluating two common HD assessments that have been adapted for telephone interview by a clinician that will be completed on behalf of the patient by their caregiver to evaluate people in the mid- to later-stages of HD.

Learn More

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Clinical Research Platform

Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease families.

For HD Families

Learn about HD and HD science, research opportunities, and local support organizations.

For Researchers

Explore and access all available resources and tools within the Enroll-HD platform.

For Clinical Study Sponsors

Explore and access scientific and operational support to assist you in conducting trials and studies in HD.

For Study Sites

Coming soon! Operational resources for study sites, including training portal access.

For Committees

Coming soon! Information for Enroll-HD governance committees.

Explore More

enroll-hd platform

For HD Families

Learn about HD and HD science, research opportunities, and local support organizations.

For Researchers

Explore and access all available resources and tools within the Enroll-HD platform to assist you in HD research.

For Clinical Study Sponsors

Explore and access scientific and operational support to assist you in conducting trials and studies in HD.

For Study Sites

Operational resources for study sites, including training portal access.

For Committees

Information for Enroll-HD governance committees.

Explore More

Enroll-HD Platform

Get Involved

HD Charge

Why is this study important?

Individuals with HD increasingly require medical care, caregiver support and long-term care as HD progresses, causing a substantial economic burden of illness for families. Defining this economic burden can help healthcare managers and decision-makers establish and prioritize healthcare policies and interventions that improve treatment and care management.

Who can join?

Enroll-HD participants age 18+ years who confirmed to have the HD gene expansion (with or without symptoms of HD), and primary caregivers (not necessarily Enroll-HD participants) of individuals with HD. Paid caregivers are not eligible to take part.

Locations

All HD Charge study site locations are displayed on the study site map.

Time commitment

Study consists of a single online survey that takes ~45 minutes to 1 hour to complete. Respondents do not have to complete the survey in one sitting.

Get Involved

If you’re interested in joining, please visit the Enroll-HD study site page to find a location near you and contact the study coordinator listed.

Get Involved

LSA

Why is this study important?

People with later-stage HD become increasingly dependent on caregivers, and attending study visits becomes more difficult. Plus some of the common assessments are no longer practical or sensitive to the changes in these stages. An assessment for people in later-stage HD that can be reported by the caregiver via phone is needed.

Who can join?

Enroll-HD participants who are in mid- to later stages of HD, and their companions.

Locations

All LSA study site locations are displayed on the study site map.

Time commitment

Two-part study. Part 1; in-person baseline visit (1 to 1.5 hours) plus remote follow up visit (45 mins to 1 hour) 7-21 days later. Baseline visit can be same day as an Enroll-HD visit.

Part 2; in-person baseline visit (~1 hour) plus remote follow-up visit (~1 hour) 1-21 days later. Baseline visit must be same day as an Enroll-HD visit.

Get Involved

If you’re interested in joining, please visit the Enroll-HD study sites to find a location near you and contact the study coordinator listed.

Get Involved

iMarkHD

Why is this study important?

Evaluation of how specific molecular, functional and structural changes influence the development of HD symptoms and disease progression may help develop imaging biomarkers that can characterize and predict events preceding symptom development and be used as outcome measures in future clinical trials.

Who can join?

iMarkHD is open to adults of either sex age 21–75 years (inclusive) confirmed to have the HD gene expansion (with or without HD signs/symptoms) and healthy volunteers. Additional inclusion and exclusion criteria are available by contacting the iMarkHD study team at imarkhdstudy@kcl.ac.uk.

Locations

Screening, clinical assessments, and MRI scans at King’s College London; PET scans at Invicro, London, UK.

Time commitment

Study conducted over ~three year period, including screening (~4 hours), baseline visit (0-3 months later), Year-1 visit (>12 months after baseline), Year-2 visits (>24 months after baseline).

Baseline, Year-1, and Year-2 visits include a clinical/MRI visit (8 hours), a PET-A visit (6 hours), and a PET-B visit (6 hours). These may include options for overnight stays.

Get Involved

This study is currently recruiting. Please visit ClinicalTrials.gov and if you’re interested in joining, please visit the Enroll-HD study sites to find a location near you and contact the study coordinator listed.

Get Involved

iMagemHTT-009

Why is this study important?

iMagemHTT-009 is assessing a PET biomarker for HD that will be able to provide an image of how mutant huntingtin accumulates in the brain. Such a biomarker would significantly improve our knowledge about HD, our ability to follow progression, and help develop therapeutics and diagnostic/prognostic tools.

Who can join?

iMagemHTT-009 is open to adults of either sex age 18-64 years (inclusive); HD individuals in various stages; healthy volunteers. Additional inclusion and exclusion criteria are available from the iMagemHTT-009 study site team.

Locations

All iMagemHTT-009 study site locations are displayed on the Study site map.

Time commitment

Two to three mandatory visits (3-7 hours) for all participants, plus an optional visit for participants who have the HD gene expansion. Overnight stay not required.

Get Involved

This study is currently in startup. Please check back for updates.

Get Involved

imageClarity

Why is this study important?

imageClarity will provide neuroimaging data from some HDClarity participants, allowing investigators to link anomalies in their blood or cerebrospinal fluid with their potential source in the brain. This will help us better understand events early in disease progression, and may provide clues to develop new drugs.

Who can join?

imageClarity will be open to anyone over age 21 years who participates in both Enroll-HD and HDClarity. Other specific conditions will apply; the most important will be a participant’s ability to go in the MRI scanner.

Locations

Study is currently in startup. When recruitment begins, study locations will be posted here. Please check back later for updates.

Time commitment

This five-year study is collecting annual MRI data in 2-3 hour visits (~90 minutes scan time). Two semi-annual visits are also planned at 6 and 18 months lasting 1-1.5 hours (~45 minutes scan time). There will be an initial screening visit and annual visits to verify participants’ continued eligibility prior to scans.

Get Involved

This study is currently in startup and will begin recruiting soon. Please check back later for updates.

Get Involved

HDClarity

Why is this study important?

HDClarity aims to facilitate therapeutic development for HD. As the number of therapeutic trials continues to increase we need to better understand potential HD biomarkers; these are necessary to evaluate how well novel therapeutics reach their intended target and to track disease progression over time. CSF is an extremely useful biosample in biomarker research since it directly surrounds the brain and so likely reflects what is happening there throughout the course of disease.

Who can join?

HDClarity is open to all Enroll-HD participants who have been confirmed to have the HD gene expansion (with or without HD signs/symptoms) and healthy control participants.

Locations

All HDClarity study site locations are displayed on the study sites map.

Time commitment

Two or three visits each year: a screening visit (1-2 hours) followed by a sampling visit (3-5 hours) within 30 days. During their first year, some participants are invited to attend an optional second sampling visit 4-8 weeks after their first.

HDClarity is an open-ended study (no set end date) with CSF collection encouraged every year. Participants may withdraw from the study at any time for whatever reason, and they may also skip any year or more than one year.

Get Involved

If you’re interested in joining, please visit the study sites to find a location near you and contact the study coordinator listed.

Get Involved

Enroll-HD

Why is this study important?

Enroll-HD enhances our understanding of HD, supports clinical trials, and provides data to help improve clinical care for HD patients. Learn more.

Who can join?

Enroll-HD is open to anyone from an HD family, including those with the HD gene expansion, those without, those at risk, and spouses/partners of people with HD. Learn more.

Locations

All Enroll-HD study site locations are displayed on the study site map.

Time commitment

One in-person clinic visit each year. Each visit lasts 1 to 2.5 hours.

Enroll-HD is an open-ended study (there is no set end date) and participants are encouraged to attend a study visit annually. Participants may withdraw from the study at any time for whatever reason, and they may also skip any year or more than one year.

Get Involved

If you’re interested in joining, please visit the study sites page to find a location near you and contact the study coordinator listed.