A Questionnaire Study on Hereditary Hemorrhagic Telangiectasia (HHT) and Other Medical Conditions, Compared to the General Population
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 2,174
- 试验地点
- 2
- 主要终点
- Prevalence of nosebleeds.
研究概览
简要总结
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
详细描述
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Single Group
- 主要目的
- Prevention
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Aged 18 or over.
- •Capacity to fill in a questionnaire.
排除标准
- •Age under 18
- •Unable to fill in a questionnaire
结局指标
主要结局
Prevalence of nosebleeds.
时间窗: Day 1
The data outcome will be captured at the time of reporting by study participants, indicating the % of respondents affected by nosebleeds at that time. Subsequent calculations will standardise for age and other participant variables.
次要结局
- Efficacy of nosebleed treatments(Day 1)