Quality of Life in Patients With Hemorrhagic Telangiectasia
NCT ID: NCT06261333
Last Updated: 2025-03-30
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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ENROLLING_BY_INVITATION
250 participants
OBSERVATIONAL
2024-01-22
2025-12-31
Brief Summary
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Patients with HHT often have telangiectasias on their faces. Additionally, many patients suffer from anemia, which can result in a pale and potentially tired appearance. Patients with HHT may be less satisfied with their appearance due to the aesthetic changes in their faces and may also experience psychosocial impairment. To further investigate this, various validated questionnaires (FACE-Q©, PROMIS-Profile-29+2, EQ5D), as well as routinely collected clinical data (e.g., laboratory values including hemoglobin levels, Curaçao criteria, smoking status, alcohol consumption, and the Epistaxis Severity Score (ESS)) will be used.
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Detailed Description
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Conditions
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Study Design
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COHORT
PROSPECTIVE
Interventions
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Questionnaires
No Intervention
Eligibility Criteria
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Inclusion Criteria
* Age above 17 years
* capable of giving consent
* Diagnosis of HHT (Curaçao criteria or genetic testing)
18 Years
ALL
No
Sponsors
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University Hospital, Essen
OTHER
Responsible Party
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Freya Droege
Principal Investigator
Locations
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Departement of Otorhinolaryngology - Head and Neck Surgery University Hospital Essen
Essen, North Rhine-Westphalia, Germany
Countries
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Other Identifiers
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23-11519-BO
Identifier Type: -
Identifier Source: org_study_id
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