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New study reveals how HHT symptoms impact daily life

NCT ID NCT07191639

Knowledge-focused Sponsor: Hospices Civils de Lyon 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study looked at how symptoms of hereditary hemorrhagic telangiectasia (HHT) affect patients' quality of life. Researchers used a special questionnaire developed with patient input to measure different aspects like physical limits, worry about bleeding, and social relationships. The goal was to better understand which symptoms matter most to patients, beyond just nosebleeds. 185 adults with HHT took part, and the study is now complete.

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

185 people

The number who actually took part.

Started

Dec 2024

Finished

May 2025

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

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

Who is studied

* Population: Patient with clinically (presence of at least 3 Curaçao criteria) and/or molecularly confirmed HHT disease * Patient of legal age (over 18 years old) * Patient who has received the information and has not objected to taking part in the study

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: * Patient with clinically (presence of at least 3 Curaçao criteria) and/or molecularly confirmed HHT disease * Patient of legal age (over 18 years old) * Patient who has received the information and has not objected to taking part in the study Exclusion Criteria: * Patients unable to read a questionnaire written in French * Adults protected by law

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Conditions

The condition(s) this trial relates to.

hereditary hemorrhagic telangiectasia

As listed by the trial registrant

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

Hereditary hemorrhagic telangiectasia (HHT)

Contacts and locations

Locations

  • Hôpital Femme-Mère-Enfant - Centre de référence pour la maladie de Rendu-Osler

    Bron, 69500, France

More trials for these conditions

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