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.

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.

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.