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News — Hidradenitis Suppurativa (HS) is a chronic inflammatory skin condition that disproportionately affects women and people of color. It begins in adolescence and can be debilitating, negatively impacting sufferers’ quality of life, physical function, work productivity and social and emotional wellbeing. Unfortunately, it is also poorly understood and understudied both clinically and biologically, although it impacts 1% of Western populations.

Established to support HS research and treatment options, HS PROGRESS, a multicenter, longitudinal study led by UC San Francisco, aims to comprehensively characterize HS from clinical and biological perspectives.  (Hidradenitis Suppurativa Prospective Observational Registry and bioSpecimen repoSitory) is establishing a cohort of HS patients to better understand the disease, evaluate current treatment strategies and develop new treatments.

HS PROGRESS has recently received funding from global biopharmaceutical company to support the registry’s efforts to accelerate development of treatment options for the condition.

“People living with hidradenitis suppurativa have faced significant unmet needs for decades, with real and lasting impacts on health and quality of life,” said Jeffrey Stark, MD, UCB’s head of medical immunology in the U.S. “Through partnering with UCSF on the HS PROGRESS patient registry, UCB is honored to work with experts who are likewise committed to understanding the clinical course of HS and treatment opportunities for this disease." 

HS causes extremely painful, inflamed and swollen lumps under the skin that may significantly limit both everyday activities and intimate relationships, and sufferers may be forced to miss school or workdays or go on disability. The lumps can break open and release malodorous fluid and pus. Flare-ups can cause scarring and tunnels under the skin, most often impacting the underarms, groin, buttocks and underneath breasts. HS may impact the psychological well-being of the patient, increasing the risk of mental health disorders like depression and suicidality.

At present, there are three FDA-approved treatments for HS patients, however, more work needs to be done to collect data about the typical HS disease course, patient characteristics associated with treatment response and specific comorbidities like diabetes and obesity. In addition, many primary care physicians and other providers are not familiar with the condition.

“HS is an understudied and underfunded condition that is more common than people think and hugely impacts quality of life,” said , MD, MHSc, UCSF associate professor of dermatology and HS PROGRESS principal study investigator. “HS drug development has lagged due to a lack of understanding about HS biology, clinical course and prognostic and therapeutic biomarkers. HS PROGRESS has the capacity to address these issues.”

The researchers across 15 academic institutions are collecting clinical data and biospecimens from HS patients for translational studies to drive drug development and establish a group of consented patients who can be recruited to future clinical studies.

“The goal of HS PROGRESS is to collect a ground-breaking longitudinal dataset that can be used to determine real-world effectiveness of agents, impact of earlier treatment, appropriate drug dosing, outcomes and comparative effectiveness and the role of comorbidities in HS management,” said Naik. “Development of a longitudinal biological dataset will facilitate drug and biomarker discovery. No other dataset like this exists for HS, and the potential of HS PROGRESS to accelerate therapeutic development is unparalleled.”

HS PROGRESS is designed to facilitate HS research through collaboration between investigators, clinicians, patients and industry in order to improve the lives of people living with HS. The multi-institutional collaborative consortium brings together research infrastructures and clinical registries, accelerating HS research to improve the lives of patients suffering from HS.

HS PROGRESS already has 16 participating study locations including UCSF, University of North Carolina at Chapel Hill, Mayo Clinic, University of Virginia, Washington University in St. Louis, University of Southern California, Henry Ford Health, University of Minnesota, University of Pennsylvania, Duke University, University of Miami, Stanford University, Northwell Health, Emory University and the Medical College of Wisconsin.

About UCSF Health: UCSF Health is recognized worldwide for its innovative patient care, reflecting the latest medical knowledge, advanced technologies and pioneering research. It includes the flagship UCSF Medical Center, which is a top-ranked specialty hospital, as well as UCSF Benioff Children’s Hospitals, with campuses in San Francisco and Oakland, Langley Porter Psychiatric Hospital and Clinics, UCSF Benioff Children’s Physicians and the UCSF Faculty Practice. These hospitals serve as the academic medical center of the University of California, San Francisco, which is world-renowned for its graduate-level health sciences education and biomedical research. UCSF Health has affiliations with hospitals and health organizations throughout the Bay Area. Visit . Follow UCSF Health on or on .

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