A National Registry For Patients With Hidradenitis Suppurativa

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Brief Summary
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.
Brief Title
A National Registry For Patients With Hidradenitis Suppurativa
Detailed Description
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.
Categories
COVID-19
Infectious Disease
Completion Date
Completion Date Type
Actual
Conditions
Hidradenitis Suppurativa
Eligibility Criteria
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
Inclusion Criteria
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)

Gender
All
Gender Based
false
Keywords
Hidradenitis Suppurativa
Registry
Last Update Post Date
Last Update Post Date Type
Actual
Last Update Submit Date
Maximum Age
99 Years
Minimum Age
18 Years
NCT Id
NCT03289585
Org Class
Other
Org Full Name
Montefiore Medical Center
Org Study Id
2014-3835 (AECOM)
Overall Status
Completed
Primary Completion Date
Primary Completion Date Type
Actual
Official Title
Development and Maintenance of a National Registry For Patients With Hidradenitis Suppurativa
Primary Outcomes
Outcome Description
Quality of life as measured using standardized Dermatology Quality of Life Index
Outcome Measure
Skin-related quality of life
Outcome Time Frame
Baseline
Outcome Description
Presence and severity of depression as measured using standardized Beck Depression Inventory
Outcome Measure
Presence and severity of depression
Outcome Time Frame
Baseline
Outcome Description
Quality of life as measured using standardized SkinDex questionnaires
Outcome Measure
Skin-related of life
Outcome Time Frame
Baseline
Outcome Description
Subject-reported subject health as measured using the standardized SF-36 questionnaires
Outcome Measure
Subject-reported subject health
Outcome Time Frame
Baseline
Outcome Description
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.
Outcome Measure
Degree of enjoyment and satisfaction experienced by subjects in daily functioning.
Outcome Time Frame
Baseline
Outcome Description
Self-reported employment and economic productivity as measured by a standardized health economic questionnaire
Outcome Measure
Employment and economic productivity
Outcome Time Frame
Baseline
Secondary Outcomes
Outcome Description
Change in quality of life as measured using standardized Dermatology Quality of Life Index after treatment initiation
Outcome Time Frame
At 6 months
Outcome Measure
Change in quality of life
Outcome Description
Change in presence and severity of depression as measured using standardized Beck Depression Inventory after treatment initiation
Outcome Time Frame
At 6 months
Outcome Measure
Change in presence and severity of depression
Outcome Description
Change in quality of life as measured using standardized SkinDex questionnaires after treatment initiation
Outcome Time Frame
At 6 months
Outcome Measure
Change in quality of life
Outcome Description
Change in subject-reported subject health as measured using standardized SF-36 questionnaires after treatment initiation
Outcome Time Frame
At 6 months
Outcome Measure
Change in subject-reported subject health
Outcome Description
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
Outcome Time Frame
At 6 months
Outcome Measure
Change in degree of enjoyment and satisfaction experienced by subjects in various areas of daily functioning
Outcome Description
Change in self-reported employment and economic productivity as measured by a standardized health economic questionnaire after treatment initiation
Outcome Time Frame
At 6 months
Outcome Measure
Change in self-reported employment and economic productivity
Start Date
Start Date Type
Actual
Status Verified Date
First Post Date
First Post Date Type
Actual
First Submit Date
First Submit QC Date
Study Population
Healthy adults (ages 18-99) with a diagnosis of Hidradenitis Suppurativa
Std Ages
Adult
Older Adult
Maximum Age Number (converted to Years and rounded down)
99
Minimum Age Number (converted to Years and rounded down)
18
Investigators
Investigator Type
Principal Investigator
Investigator Name
Steven Cohen
Investigator Email
srcohen@montefiore.org
Investigator Phone
917-817-9696