HS PROGRESS is designed to facilitate HS research through collaboration between investigators, clinicians, patients and industry to improve the lives of people living with HS.

University of California-San Francisco (UCSF) is leading HS PROGRESS (Hidradenitis Suppurativa [HS] Prospective Observational Registry and bioSpecimen repoSitory), a multicenter, longitudinal study that aims to comprehensively characterize HS from clinical and biological perspectives. 

At present, there are few effective treatments for HS patients. There is only one U.S Food and Drug Administration-approved treatment, but its effectiveness is hampered by lack of 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 common and hugely impacts quality of life,” says Haley Naik, MD, UCSF associate professor of dermatology and HS PROGRESS principal study investigator, in a news release. “HS drug development has lagged due to a lack of understanding about HS biology and clinical course. HS clinical trials have struggled with high placebo rates, which are in part due to patient selection and limitations of outcome measures. HS PROGRESS has the capacity to address both of these issues.”

The researchers will collect 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 the creation of 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,” says Naik. “Development of a longitudinal biological dataset will facilitate drug and biomarker discovery and testing of pipeline compounds. No other dataset like this exists for HS and the potential of HS PROGRESS to accelerate therapeutic development is unparalleled.”

HS PROGRESS already has twelve participating study locations including UCSF, University of North Carolina at Chapel Hill, Mayo Clinic, Penn State, University of Virginia, Washington University in St. Louis, University of Southern California, Henry Ford Health, University of Minnesota, University of Pennsylvania, Duke University and University of Miami. Four additional study locations will be joining the consortium before the end of 2023.