HS progress: Baseline characteristics and disease impact

Summary: Abstract Body: 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. Valdemar Wendelboe Nielsen^{1, 2}, Michelle A. Lowes³, Ashley Yates², Afsaneh Alavi⁴, Richard Flowers⁷, Iltefat Hamzavi⁸, Joslyn Kirby⁹, Robert Micheletti⁶, Christopher Sayed⁵, Haley Naik² 1. Bispebjerg Hospital, Copenhagen, Denmark. 2. University of California San Francisco, San Francisco, CA, United States. 3. The Rockefeller University, New York, NY, United States. 4. Mayo Clinic Minnesota, Rochester, MN, United States. 5. The University of North Carolina at Chapel Hill, Chapel Hill, NC, United States. 6. University of Pennsylvania, Philadelphia, PA, United States. 7. University of Virginia, Charlottesville, VA, United States. 8. Henry Ford Health System, Detroit, MI, United States. 9. Penn State Health Milton S Hershey Medical Center, Hershey, PA, United States. Clinical Research: Epidemiology and Observational Research