Survey of X-Linked Hypohidrotic Ectodermal Dysplasia Carrier Women's Outlook Towards Reproduction, Potential XLHED Treatments and Genetic Testing
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 500
- 试验地点
- 1
- 主要终点
- To study the outlook of XLHED carrier females toward reproduction, potential XLHED treatments and genetic testing.
研究概览
简要总结
In this survey of X-Lined Hypohidrotic Ectodermal Dysplasia (XLHED) carrier females, Edimer proposes to review responses to an XLHED Carrier Outlook toward Reproduction Survey in order to understand attitudes toward reproduction, potential treatments and genetic testing in order to improve the understanding of the decisions that XLHED carrier females make regarding their reproductive future.
详细描述
The full survey is available here: https://www.surveymonkey.com/s/X-CORS
For more questions or more details you may contact the Principal Investigator, Carrie Milliard: MILLIC@mmc.org or 207-662-6712
研究设计
- 研究类型
- Observational
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- Female
- 接受健康志愿者
- 否
入选标准
- •Provide signed informed consent;
- •18 years of age or older
- •Females with:
- •the clinical characteristics of HED, including at least two of the following characteristics:
- •clinical signs and symptoms of HED:
- •a history of decreased sweating;
- •abnormal teeth (fewer permanent teeth, teeth are smaller than average and often have conical crowns);
- •sparseness of scalp and body hair;
- •a clinical diagnosis from a healthcare professional;
- •or at least one HED affected family member
- •OR genetically confirmed HED or XLHED;
排除标准
- 未提供
结局指标
主要结局
To study the outlook of XLHED carrier females toward reproduction, potential XLHED treatments and genetic testing.
时间窗: study day 1
Survey results will be collected during the 1 day of subject involvement.
次要结局
未报告次要终点