Recruiting

Observational Study

Sponsor:

Ashley Nelson

Code:

NCT07474428

Conditions

Hereditary Haemorrhagic Telangiectasia (HHT)

Eligibility Criteria

Sex: All

Age: 2 - 25

Healthy Volunteers: Not accepted

Study Details

Brief summary:

This observational study evaluates health-related quality of life (HR-QoL) in pediatric and young adult patients aged 2-25 years with Hereditary Hemorrhagic Telangiectasia (HHT). Eligible participants are patients receiving care at Cincinnati Children's Hospital Medical Center and / or their caregivers. Participants will complete validated quality-of-life questionnaires assessing physical, emotional, social, and disease-specific functioning over the past 30 days. A paired retrospective chart review will assess disease severity and clinical utilization, including procedures and imaging studies. The primary objective is to describe mean QoL scores for this population. Secondary objectives include evaluating associations between QoL scores, disease severity, and clinical utilization.

Conditions

Hereditary Haemorrhagic Telangiectasia (HHT)

Study ID

NCT07474428

Start date

Sep 1, 2026

Status verified date

Oct, 2026

Completion date

Aug, 2027

Anticipated

Primary completion date

Dec, 2026

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 2 - 25

Healthy Volunteers: Not accepted

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.

Study Design

Enrollment

70 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

  • PedsQL Total Score [ Time Frame: 30 days ]
  • HHT-QOL [ Time Frame: past 30 days ]

Central Contacts and Locations

Central contacts

Katie Wusik, Master of Genetic Counseling

(513) 636-3200katie.wusik@cchmc.org

Ashley Nelson

ashley.nelson@cchmc.org

Locations

Cincinnati Children's Hospital Medical Center

Recruiting

Cincinnati, Ohio, United States, 45221

Contacts

Katie Wusik, Master of Genetic Counseling

513-636-3200katie.wusik@cchmc.org

More Information

Sponsor

Ashley Nelson

Last update posted

Oct 22, 2026

Last verified

Oct, 2026

Keywords

  • HHT
  • QOL
  • Pedatric

Trial information was received from ClinicalTrials.gov and was last updated on 2026-10-23. This information was provided to ClinicalTrials.gov by Ashley Nelson on 2026-10-22. Recruitment status is synced daily from ClinicalTrials.gov and may not reflect the sponsor's current status. Confirm during your call.