NCT02464644

Frequency of Common Medical Conditions in People With and Without HHT

A Questionnaire Study on Hereditary Hemorrhagic Telangiectasia (HHT) and Other Medical Conditions, Compared to the General Population

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 2,174 (actual)
• Sponsor: Imperial College London · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Accepted

Summary

Hereditary Hemorrhagic Telangiectasia (HHT) affects 1 in 5,000 people. The purpose of this study is to provide data regarding the frequency of common health conditions and the tolerability of therapies in HHT by using a questionnaire. This will be filled in by both people with HHT, and controls who will be members of the general population without HHT. The questionnaire has been designed primarily for web based entry, but can also be circulated in paper format on request

Detailed description

Hereditary Hemorrhagic Telangiectasia (HHT) affects 1 in 5,000 people, usually causing nosebleeds, skin blood spots, and/or anemia as a result of bleeding from the nose or gut. The majority of people with HHT also have abnormal blood vessels (arteriovenous malformations) in internal organs such as the lungs, liver and brain. Management of this multisystem disorder is highly challenging. The Lead Applicant has spent 20 years working on this rare disease, and identified multiple areas where more evidence is required to assist clinicians and patients with this lifelong condition. A particular issue is what happens when people with HHT have other common medical conditions such as asthma, cancer, diabetes, or heart disease. Do they have the same pattern of problems as the general population? Can they use the same drugs? Are further safeguards needed? For these important questions, current advice can only be based on theoretical considerations and anecdotal data. The ultimate goal of this study is to use information derived from a questionnaire to provide evidence to assist clinicians treating people with HHT. Data will be entered from April 2012. Data will be analysed on average 6-8 months after entry.

Conditions

• Hereditary Hemorrhagic Telangiectasia (HHT)

Interventions

Type	Name	Description
OTHER	Questionnaire	To capture large sufficiently large numbers of individuals for appropriate statistical power (see below), a web based questionnaire design was considered the most appropriate tool. SurveyMonkey was identified as the most suitable means to generate the questionnaire, facilitate confidential answers by the target populations, and for analysis of questionnaire data. The designed survey can also be presented in paper format, and used in our clinical service.

Timeline

• Start date: 2012-04-01
• Primary completion: 2015-05-01
• Completion: 2015-05-01
• First posted: 2015-06-08
• Last updated: 2023-09-28

Locations

1 site across 1 country: United Kingdom