Development and Maintenance of a National Registry For Patients With Hidradenitis Suppurativa
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 400
- 试验地点
- 1
- 主要终点
- Skin-related quality of life
研究概览
简要总结
The goal of this study is to get a better understanding of the skin condition, Hidradenitis Suppurativa, and to find out how the disease affects quality of life. The investigators hope this information will help improve treatment for this skin condition.
详细描述
The goal of this study is to get a better understanding of the skin condition, Hidradenitis Suppurativa, and to find out how the disease affects quality of life. The investigators will utilize a compilation of validated questionnaires including the Beck Depression Inventory form, Dermatology Life Quality Index (DLQI), Skindex, SF-36 health survey, the Quality of Life Enjoyment and Satisfaction Questionnaire- short form (Q-LES-Q-SF) and the Employment/Productivity Health Economic Questionnaire as well as other relevant clinical data. The investigators will additionally collect a modified Hidradenitis Suppurativa Lesion, Area, and Severity Index (HS-LASI) (or other appropriate disease severity score as determined by the team) from the physician of each enrollee. The investigators hope this information will help improve treatment for this skin condition.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 99 Years（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Subjects 18-99 years of age who have a diagnosis of Hidradenitis Suppurativa (as deemed by a physician at the Montefiore Hidradenitis Suppurativa Treatment Center)
排除标准
- •Patients without a diagnosis of Hidradenitis Suppurativa or under the age of 18
- •Patients who are unable to answer given questions within the 6 surveys
- •Patient who are unable to be clinically evaluated by a Montefiore physician
结局指标
主要结局
Skin-related quality of life
时间窗: Baseline
Quality of life as measured using standardized Dermatology Quality of Life Index
Presence and severity of depression
时间窗: Baseline
Presence and severity of depression as measured using standardized Beck Depression Inventory
Skin-related of life
时间窗: Baseline
Quality of life as measured using standardized SkinDex questionnaires
Subject-reported subject health
时间窗: Baseline
Subject-reported subject health as measured using the standardized SF-36 questionnaires
Degree of enjoyment and satisfaction experienced by subjects in daily functioning.
时间窗: Baseline
Degree of enjoyment and satisfaction experienced by subjects in various areas of daily functioning as measured by the standardized Quality of Life Enjoyment and Satisfaction Questionnaire-short form.
Employment and economic productivity
时间窗: Baseline
Self-reported employment and economic productivity as measured by a standardized health economic questionnaire
次要结局
- Change in quality of life(At 6 months)
- Change in presence and severity of depression(At 6 months)
- Change in subject-reported subject health(At 6 months)
- Change in degree of enjoyment and satisfaction experienced by subjects in various areas of daily functioning(At 6 months)
- Change in self-reported employment and economic productivity(At 6 months)