NCT05052606招募中不适用
INSIGHTS Registry - Inspiring New Science In Guiding Healthcare in Turner Syndrome
适应症
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 5,000
- 试验地点
- 10
- 主要终点
- Health conditions
研究概览
简要总结
INSIGHTS is a registry research study that collects key information on medical history for girls and women with Turner syndrome and the clinical care they receive. This includes genetic tests, imaging, medications, and more for hundreds of patients seen at a number of clinics across the US. In addition to learning a lot about the current state of health for individuals with TS, INSIGHTS serves as an infrastructure to conduct future studies are meaningful to patients and their families.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 性别
- Female
- 接受健康志愿者
- 否
入选标准
- •Individuals with TS and TS variants as defined by the TS Clinical Practice Guideline definition (karyotype consistent with TS, phenotypic female, clinical feature(s) of TS)
- •Informed consent/assent as appropriate
排除标准
- •a. Lack of a TS diagnosis on file
结局指标
主要结局
Health conditions
时间窗: From study start until condition observed, up to 15 years
Average number of chronic diagnoses per person
次要结局
- Prevalence of hearing loss(From study start until condition observed, up to 15 years)
- Prevalence of mental health diagnoses(From study start until condition observed, up to 15 years)
- Prevalence of premature ovarian insufficiency(From study start until condition observed, up to 15 years)
- Cardiometabolic diagnoses - prevalence of obesity(From study start until condition observed, up to 15 years)
- Cardiometabolic diagnoses - prevalence of hypertension(From study start until condition observed, up to 15 years)
- Cardiometabolic diagnoses - prevalence of dyslipidemia(From study start until condition observed, up to 15 years)
- Cardiometabolic diagnoses - prevalence of fatty liver disease(From study start until condition observed, up to 15 years)
研究者
研究点 (10)
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