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Huntington disease survey aims to make clinical trials more Participant-Friendly

NCT ID NCT06343220

Knowledge-focused Sponsor: Huntington Study Group Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 2 times

Summary

This completed survey study asked 131 people with or at risk for Huntington disease about their feelings, attitudes, and beliefs toward clinical research. The goal is to help researchers design better studies that are more aware of participants' needs. No treatment or drug was tested.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this survey could help researchers design more participant-friendly clinical trials for Huntington disease.
What could go wrong
This is a completed survey study, not a treatment trial. It does not test any drug or therapy, so it cannot directly improve health.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

131 people

The number who actually took part.

Started

Apr 2024

Finished

Dec 2025

Lead sponsor

A research network

The lead sponsor is a research network or cooperative group.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Must either have HD or be at risk for having HD.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Participants must either have HD or be at risk for having HD * Participants must be 18 years of age or older * Participants must live in the United States * Inclusion of participants will not be based on race, gender, or ethnicity. Exclusion Criteria: \-

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Conditions

The condition(s) this trial relates to.

Charcot-Marie-Tooth disease type 2A2 Huntington disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Huntington disease

Contacts and locations

Locations

  • Huntington Study Group

    Rochester, New York, 14618, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.