Global Healthcare Study on Hidradenitis Suppurativa (GHSHS)
2026年6月15日 更新者：Julia Tatjana Maul
The Global Healthcare Study on Hidradenitis Suppurativa (GHSHS) is an international, multicenter observational study hosted by the University of Zurich (UZH) investigating healthcare access, treatment patterns, disease severity, and quality of life in patients with psoriasis.
The study collects standardized clinical data from routine medical records to identify disparities in healthcare delivery and outcomes across different healthcare systems.
研究概览
地位
招聘中
详细说明
The study employs a combined retrospective and prospective design, collecting data from routine clinical care and medical records spanning from January 2020 through the study conclusion.
研究类型
观察性的
注册 (估计的)
9600
联系人和位置
本节提供了进行研究的人员的详细联系信息，以及有关进行该研究的地点的信息。
学习联系方式
- 姓名：Julia-Tatjana Maul, Prof. Dr. med.
- 电话号码：+41 76 441 51 09
- 邮箱：julia-tatjana.maul@usz.ch
研究联系人备份
- 姓名：Johannes Didaskalu
- 邮箱：johannes.didaskalu@usz.ch
学习地点
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Zurich、瑞士
- 招聘中
- University of Zurich
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接触：
- Julia-Tatjana Maul, Prof. Dr. med.
- 电话号码：+41 76 441 51 09
- 邮箱：julia-tatjana.maul@usz.ch
-
-
参与标准
研究人员寻找符合特定描述的人，称为资格标准。这些标准的一些例子是一个人的一般健康状况或先前的治疗。
资格标准
适合学习的年龄
- 孩子
- 成人
- 年长者
接受健康志愿者
不
取样方法
非概率样本
研究人群
Patient populations across world regions seen for hidradenitis suppurativa.
描述
Inclusion Criteria:
- Signed General Consent Form, or equivalent document
- Confirmed diagnosis of Hidradenitis Suppurativa
Exclusion Criteria:
- Inability to provide informed consent.
- Datasets with ambiguous or unclear diagnosis.
学习计划
本节提供研究计划的详细信息，包括研究的设计方式和研究的衡量标准。
研究是如何设计的？
设计细节
研究衡量的是什么？
主要结果指标
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
International Hidradenitis Suppurativa Severity Score System (IHS4)
大体时间：Baseline and follow-up visits every 6-12 months for up to 5 years.
|
Clinician-assessed measure of hidradenitis suppurativa severity based on the number of inflammatory nodules, abscesses, and draining tunnels; higher scores indicate more severe disease.
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Baseline and follow-up visits every 6-12 months for up to 5 years.
|
次要结果测量
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
Dermatology Life Quality Index (DLQI)
大体时间：Baseline and follow-up visits every 6-12 months for up to 5 years.
|
Patient-reported measure of dermatology-specific quality of life; total score ranges from 0 to 30, with higher scores indicating greater impairment.
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Baseline and follow-up visits every 6-12 months for up to 5 years.
|
|
Hurley Staging System
大体时间：Baseline and follow-up visits every 6-12 months for up to 5 years.
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Clinician-assessed classification of hidradenitis suppurativa severity categorized as Stage I, Stage II, or Stage III.
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Baseline and follow-up visits every 6-12 months for up to 5 years.
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Sartorius Hidradenitis Suppurativa Severity Score (HSS)
大体时间：Baseline and follow-up visits every 6-12 months for up to 5 years.
|
Clinician-assessed measure of hidradenitis suppurativa severity incorporating lesion counts and anatomical involvement; higher scores indicate more severe disease.
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Baseline and follow-up visits every 6-12 months for up to 5 years.
|
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Physician Global Assessment (PGA)
大体时间：Baseline and follow-up visits every 6-12 months for up to 5 years.
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Clinician-assessed global measure of hidradenitis suppurativa severity on a scale from 0 to 4, with higher scores indicating more severe disease.
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Baseline and follow-up visits every 6-12 months for up to 5 years.
|
|
Patient-reported Numerical Rating Scale (NRS) for severity of hidradenitis suppurativa
大体时间：Baseline and follow-up visits every 6-12 months for up to 5 years.
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Patient-reported assessment of overall hidradenitis suppurativa severity on a numerical rating scale from 0 (no disease) to 10 (most severe disease imaginable).
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Baseline and follow-up visits every 6-12 months for up to 5 years.
|
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Patient-reported Numerical Rating Scale (NRS) for pain related to hidradenitis suppurativa
大体时间：Baseline and follow-up visits every 6-12 months for up to 5 years.
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Patient-reported assessment of hidradenitis suppurativa-related pain on a numerical rating scale from 0 (no pain) to 10 (worst imaginable pain).
|
Baseline and follow-up visits every 6-12 months for up to 5 years.
|
合作者和调查者
在这里您可以找到参与这项研究的人员和组织。
调查人员
- 首席研究员：Julia-Tatjana Maul, Prof. Dr. med.、University of Zurich
研究记录日期
这些日期跟踪向 ClinicalTrials.gov 提交研究记录和摘要结果的进度。研究记录和报告的结果由国家医学图书馆 (NLM) 审查，以确保它们在发布到公共网站之前符合特定的质量控制标准。
研究主要日期
学习开始 (实际的)
2025年1月1日
初级完成 (估计的)
2029年12月31日
研究完成 (估计的)
2029年12月31日
研究注册日期
首次提交
2026年6月15日
首先提交符合 QC 标准的
2026年6月15日
首次发布 (实际的)
2026年6月22日
研究记录更新
最后更新发布 (实际的)
2026年6月22日
上次提交的符合 QC 标准的更新
2026年6月15日
最后验证
2026年6月1日
更多信息
此信息直接从 clinicaltrials.gov 网站检索，没有任何更改。如果您有任何更改、删除或更新研究详细信息的请求，请联系 register@clinicaltrials.gov. clinicaltrials.gov 上实施更改，我们的网站上也会自动更新.