Chronic inflammation of the skin, or Hidradenitis Suppurativa (HS), disproportionately affects women and people of color. It starts in adolescence and can be debilitating, negatively impacting suffers’ quality of life, physical function, work productivity, and the social and emotional wellbeing. Unfortunately, it is also poorly understood and understudied both clinically and biologically, although it impacts 1% of Western populations.
To support HS research and treatment options, UC San Francisco is leading “HS PROGRESS,” a multicenter, longitudinal study that aims to comprehensively characterize HS from clinical and biological perspectives. HS PROGRESS (Hidradenitis Suppurativa Prospective Observational Registry and bioSpecimen repoSitory) will establish a cohort of HS patients to better understand the disease, evaluate current treatment strategies and develop new treatments.
HS causes painful, inflamed swollen lumps under the skin. The lumps can break open and release fluid and puss. Flare-ups, can cause scarring and tunnels under the skin, most often impacting the underarms, groin, buttocks and underneath breasts. HS may significantly limit many everyday activities, and sufferers may be forced to go on disability. Additionally, the condition may be malodorous causing embarrassment and psychologically impacting the well-being of the patient, thereby increasing the risk of suicide.
At present, there are few effective treatments for HS patients. There is only one FDA-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,” said Haley Naik, MD, 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 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.”
Accelerate therapeutic development and improve patient lives
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,” said 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 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 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.
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