0203 HS progress: Baseline characteristics and disease impact

Document Type

Conference Proceeding

Publication Date

8-1-2025

Publication Title

J Invest Dermatol

Abstract

Rigorous clinical characterization of diverse individuals with hidradenitis suppurativa (HS) is lacking, thus limiting understanding of clinical course and therapeutic effectiveness in real-world populations. We report baseline characteristics of the multicenter longitudinal Hidradenitis Suppurativa Prospective Observational REgistry and bioSpecimen repository (HS PROGRESS). Since 2020, HS participants have completed electronic surveys and dermatologic evaluations with validated patient-reported outcomes and HS disease measures. Descriptive statistics are presented. Across 7 U.S. centers, 535 participants (79.4% female; median (IQR) age 35.1 years (28.3-42.9); BMI 33.5 kg/m2 (27.6-39.8), White 62%, African American 29%, Asian 9%, American Native 5%, Pacific Islander 2%; Hispanic 16%) have been enrolled to date. Median age of onset was 18 years (13-25) and diagnostic delay was 4.5 years (1-10), suggesting increased awareness of HS. Obesity (41.9%), anxiety (41.1%) and depression (33.5%) were common. Moderate and severe disease predominated (Hurley stage I 15.6%, II 57.2%, III 27.2%; median IHS4 of 7 (2-25)). In the last week, pain levels were a median 5 (3-6) on a scale from 1-10 and 52.1% reported very large or extremely large effect on quality of life. 89.6%, 92.3%, and 35.7% reported using topical, systemic, and surgical treatments, respectively. Prior biologic use was limited to 47.8% of participants, suggesting barriers to biologic access. High-fidelity data captured from diverse HS patient in the national HS PROGRESS study will be key to identifying prognostic and therapeutic biomarkers and driving therapeutic development.

Volume

145

Issue

8

First Page

S36

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