An observational study in Hidradenitis Suppurativa, sponsored by University of Chicago. Terminated at 1 site in United States. Open to participants aged 7 Years and older. Per ClinicalTrials.gov, last updated 2026-03-04.
Sponsored by University of Chicago · Observational
The aim of this study is to find a genetic link or family trait connecting persons with Hidradenitis Suppurativa (HS) to each other. As a result, discover the cause and perhaps treatment for Hidradenitis Suppurativa (HS).
Hidradenitis suppurativa (HS) is a chronic, debilitating skin disease characterized by multiple abscesses located predominantly in areas such as armpit, genital, pelvic, and perineum. It is considered an orphan disease of unknown origin and no existing treatment with a population prevalence estimated between 1-4%. It develops in otherwise healthy patients after puberty and affects patients life-long. HS often requires multiple surgical procedures to drain large abscesses, or hospitalization to treat infected wounds, can lead to feelings of personal embarrassment and social stigmatization.
Anecdotal evidence from affected families shows that HS often "runs in families" and may be inherited in a Mendelian fashion; however, no adequately powered study has been undertaken to investigate this hypothesis. This project aims to characterize the inheritance pattern of HS in families, and identify the genetic cause of this disease in those families with evidence for monogenic inheritance.
Data collection includes blood sample analysis (DNA), medical history, and information pertaining to any known family history of HS, from which a familial pedigree can be generated. This 'family-based' genetic study design will include both affected and unaffected family members, ideally spanning several generations. Therefore, study patients will be asked to refer their immediate and extended (affected and unaffected) family members to this research study.
284 studies on the registry are indexed under Hidradenitis Suppurativa; 87 are open to participants now.
This study's enrollment of 97 is below the median of 170 across 72 observational studies indexed under Hidradenitis Suppurativa.
Browse Hidradenitis Suppurativa studies →University of Chicago is the lead sponsor of 924 studies on the registry; 185 are open to participants now.
Of its 103 completed or terminated interventional studies of FDA-regulated products, 72 (70%) have results posted.
Counted across the registry records on this site, refreshed daily.
Participants with a history of Hidradenitis Suppurativa, and their biological family members.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
(Affected) persons with a medical history of symptoms related to Hidradenitis Suppurativa.
(Unaffected) family of participants, having no history of symptoms related to Hidradenitis Suppurativa.
Hidradenitis Suppurativa Genetic linkage
Determine the genetic linkage of Hidradenitis Suppurativa (HS). Measurements are based on Gene panel assays of DNA specimen (blood or saliva) to find rare variant(s) linked to HS. Specimen samples include those provided by affected participants, and when possible they're biological family. A Gene panel diagnostic determines the number of variants (or mutation) in multiple genes, potentially identifying a genetic linkage of mendelian inheritance.
Time frame: 1-Day Study Participation
Demographics of Participant Population
Compare demographic variables of the affected population to analyze HS symptom history. Statistical Analysis of data collected via participant interview: Gender (at birth) Race (ethnicity) Age (at symptom start) Health history (related to HS) Family history (related to HS)
Time frame: 1-Day Study Participation
Pattern of Affected Family
Measure inheritance proximity pattern of biologically related family, affected by HS symptoms. A 'Pedigree' will be generated using family history data collected during the study interview: Immediate family - parental, sibling, children Extended family (paternal vs maternal) - uncle, aunt, cousin Outcomes could span multiple generations.
Time frame: 1-Day Study Participation
Number of Variants Shared
Determine the number of shared rare variants (or mutations) in genes associated with HS, between affected participants and their family. Measured by Gene panel assay of DNA specimen (blood or saliva) A Gene panel diagnostic determines the number of variants (or mutation) in multiple genes, potentially identifying a genetic linkage of mendelian inheritance.
Time frame: 1-Day Study Participation
Plan to share: No
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Ran from Sep 2019 to primary completion in Feb 2026, 77 months.
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This study is terminated, as verified in Mar 2026. You cannot join it, but the record below documents what was studied.
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