Hidradenitis Suppurativa (Acne Inversa), Hidradenitis Suppurativa (HS)
Conditions
Keywords
Dermastudy, GHSHS, GHRSD
Brief summary
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.
Detailed description
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.
Interventions
None listed
Sponsors
Julia Tatjana Maul
University of Zurich
University Hospital, Zürich
Study design
Observational model
COHORT
Time perspective
OTHER
Eligibility
Sex/Gender
ALL
Age
14 Years to No maximum
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| International Hidradenitis Suppurativa Severity Score System (IHS4) | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Hurley Staging System | Baseline and follow-up visits every 6-12 months for up to 5 years. | Clinician-assessed classification of hidradenitis suppurativa severity categorized as Stage I, Stage II, or Stage III. |
| Sartorius Hidradenitis Suppurativa Severity Score (HSS) | 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. |
| Physician Global Assessment (PGA) | Baseline and follow-up visits every 6-12 months for up to 5 years. | Clinician-assessed global measure of hidradenitis suppurativa severity on a scale from 0 to 4, with higher scores indicating more severe disease. |
| Dermatology Life Quality Index (DLQI) | 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. |
| Patient-reported Numerical Rating Scale (NRS) for severity of hidradenitis suppurativa | Baseline and follow-up visits every 6-12 months for up to 5 years. | Patient-reported assessment of overall hidradenitis suppurativa severity on a numerical rating scale from 0 (no disease) to 10 (most severe disease imaginable). |
| Patient-reported Numerical Rating Scale (NRS) for pain related to hidradenitis suppurativa | Baseline and follow-up visits every 6-12 months for up to 5 years. | Patient-reported assessment of hidradenitis suppurativa-related pain on a numerical rating scale from 0 (no pain) to 10 (worst imaginable pain). |
Countries
Switzerland
Contacts
CONTACTJulia-Tatjana Maul, Prof. Dr. med.
CONTACTJohannes Didaskalu
PRINCIPAL_INVESTIGATORJulia-Tatjana Maul, Prof. Dr. med.
University of Zurich
Outcome results
None listed