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A National Registry For Patients With Hidradenitis Suppurativa

Completed
Conditions
Hidradenitis Suppurativa
Registration Number
NCT03289585
Lead Sponsor
Montefiore Medical Center
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.

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.

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
400
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

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
Skin-related quality of lifeBaseline

Quality of life as measured using standardized Dermatology Quality of Life Index

Presence and severity of depressionBaseline

Presence and severity of depression as measured using standardized Beck Depression Inventory

Skin-related of lifeBaseline

Quality of life as measured using standardized SkinDex questionnaires

Subject-reported subject healthBaseline

Subject-reported subject health as measured using the standardized SF-36 questionnaires

Degree of enjoyment and satisfaction experienced by subjects in daily functioning.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 productivityBaseline

Self-reported employment and economic productivity as measured by a standardized health economic questionnaire

Secondary Outcome Measures
NameTimeMethod
Change in quality of lifeAt 6 months

Change in quality of life as measured using standardized SkinDex questionnaires after treatment initiation

Change in presence and severity of depressionAt 6 months

Change in presence and severity of depression as measured using standardized Beck Depression Inventory after treatment initiation

Change in subject-reported subject healthAt 6 months

Change in subject-reported subject health as measured using standardized SF-36 questionnaires after treatment initiation

Change in self-reported employment and economic productivityAt 6 months

Change in self-reported employment and economic productivity as measured by a standardized health economic questionnaire after treatment initiation

Change in degree of enjoyment and satisfaction experienced by subjects in various areas of daily functioningAt 6 months

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

Trial Locations

Locations (1)

Montefiore Medical Center

🇺🇸

Bronx, New York, United States

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