Den här översättningen är inte klar ännu. Den här sidan är just nu på engelska.

Gå till den engelska sidan

Cure My Disease

Don't miss your cure!

 Log in / Sign up

New study to measure daily life impact of rare bleeding disorder in youth

NCT ID NCT07474428

Knowledge-focused Sponsor: Ashley Nelson 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 This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study looks at how hereditary hemorrhagic telangiectasia (HHT) affects the quality of life of children and young adults aged 2 to 25. Participants will fill out questionnaires about their physical, emotional, and social well-being. Researchers will also review medical records to see how severe the disease is and how often patients need medical care. The goal is to better understand the real-world impact of HHT on young patients.

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

About 70 people

The number the study aims to enrol. It can still change while the study runs.

Expected to start

Jul 2026

An estimate. Start dates often move.

Expected to finish

Aug 2027

An estimate. End dates often move.

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

The study population will include pediatric and young adult patients aged 2-25 years with a confirmed diagnosis of Hereditary Hemorrhagic Telangiectasia receiving care at Cincinnati Children's Hospital Medical Center. Eligible participants will be identified through the electronic medical record based on diagnostic criteria and clinic records. Both caregiver proxy respondents (for children aged 2-17 years) and patient self-report respondents (for individuals aged 8-25 years) will be included. Participants will complete validated quality-of-life questionnaires assessing health-related and disease-specific quality of life over the prior 30 days. A paired retrospective chart review will be conducted to obtain clinical variables including disease severity, procedures, imaging studies, and other healthcare utilization measures associated with HHT.

Ages

2 to 25 years

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 aged 2-25 years with a confirmed (either genetic or clinical) diagnosis of definite HHT * Parent or legal guardian willing and able to complete the caregiver survey for patients aged 2-17. * For patients \>18, willing and able to complete the patient survey. * Receipt of care through CCHMC (at least one visit with genetic counselor or director of HHT Center) * Ability to complete survey in English * For self-report: patient age greater than or equal to 8 years old that assent to survey. Exclusion Criteria: * Patients that are older than 25 years old. * Patients that are younger than 2 years old. * Individuals without definite HHT diagnosis.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Hereditary haemorrhagic telangiectasia (HHT) are added.

Vår säkerhetsrekommendation!

Genom att skicka in godkänner du våra Användarvillkor

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 haemorrhagic telangiectasia (HHT)

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Cincinnati Children's Hospital Medical Center

    Cincinnati, Ohio, 45221, United States