A National Registry For Patients With Hidradenitis Suppurativa

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

Official Title
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Development and Maintenance of a National Registry For Patients With Hidradenitis Suppurativa

Conditions
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Hidradenitis Suppurativa

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: 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) Exclusion Criteria: 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

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 99 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Hidradenitis Suppurativa Cohort<br>Patients with Hidradenitis Suppurativa (ages 18-99 years old) will be asked to complete a series of questionnaires on how Hidradenitis Suppurativa impacts quality of life. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Skin-related quality of life | Quality of life as measured using standardized Dermatology Quality of Life Index | Baseline | 
| Presence and severity of depression | Presence and severity of depression as measured using standardized Beck Depression Inventory | Baseline | 
| Skin-related of life | Quality of life as measured using standardized SkinDex questionnaires | Baseline | 
| Subject-reported subject health | Subject-reported subject health as measured using the standardized SF-36 questionnaires | Baseline | 
| Degree of enjoyment and satisfaction experienced by subjects in daily functioning. | 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. | Baseline | 
| Employment and economic productivity | Self-reported employment and economic productivity as measured by a standardized health economic questionnaire | Baseline | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in quality of life | Change in quality of life as measured using standardized Dermatology Quality of Life Index after treatment initiation | At 6 months | 
| Change in presence and severity of depression | Change in presence and severity of depression as measured using standardized Beck Depression Inventory after treatment initiation | At 6 months | 
| Change in quality of life | Change in quality of life as measured using standardized SkinDex questionnaires after treatment initiation | At 6 months | 
| Change in subject-reported subject health | Change in subject-reported subject health as measured using standardized SF-36 questionnaires after treatment initiation | At 6 months | 
| Change in degree of enjoyment and satisfaction experienced by subjects in various areas of daily functioning | Change in 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 after treatment initiation | At 6 months | 
| Change in self-reported employment and economic productivity | Change in self-reported employment and economic productivity as measured by a standardized health economic questionnaire after treatment initiation | At 6 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Hidradenitis Suppurativa, Registry