UCSF-led Study Aims to Improve Treatment of Painful Skin Disease
Hidradenitis Suppurativa (HS) is a chronic inflammatory skin condition that significantly impacts the quality of life of those affected, particularly women and people of color. Characterized by painful, inflamed lumps under the skin, HS can lead to severe physical, emotional, and social consequences. Despite its prevalence, affecting approximately 1% of Western populations, HS remains poorly understood and understudied.
The HS PROGRESS Initiative
To address the critical gaps in HS research and treatment, the HS PROGRESS (Hidradenitis Suppurativa Prospective Observational Registry and bioSpecimen repoSitory) study was established. Led by UC San Francisco, this multicenter, longitudinal study aims to comprehensively characterize HS from both clinical and biological perspectives. The initiative has recently received funding from global biopharmaceutical company UCB, marking a significant step forward in the quest to develop effective treatments for HS.
The Impact of HS
HS causes extremely painful, inflamed, and swollen lumps that can break open and release malodorous fluid and pus. These symptoms often lead to scarring and the formation of tunnels under the skin, primarily affecting areas such as the underarms, groin, buttocks, and underneath the breasts. The condition not only limits everyday activities and intimate relationships but also increases the risk of mental health disorders, including depression and suicidality.
Current Treatments and the Need for Further Research
Currently, there are three FDA-approved treatments for HS. However, there is a pressing need for more data on the typical disease course, patient characteristics associated with treatment response, and specific comorbidities like diabetes and obesity. Many primary care physicians and other providers are not familiar with HS, highlighting the importance of increased awareness and education.
The Role of HS PROGRESS
HS PROGRESS is designed to facilitate HS research through collaboration between investigators, clinicians, patients, and industry. The study is collecting clinical data and biospecimens from HS patients across 15 academic institutions to drive drug development and establish a group of consented patients for future clinical studies. This groundbreaking longitudinal dataset aims to determine the real-world effectiveness of treatments, the impact of earlier intervention, appropriate drug dosing, outcomes, and the role of comorbidities in HS management.
A Collaborative Effort
The multi-institutional collaborative consortium brings together research infrastructures and clinical registries to accelerate HS research and improve the lives of patients suffering from this debilitating condition. With 16 participating study locations, including prestigious institutions like the Mayo Clinic, Duke University, and Stanford University, HS PROGRESS is poised to make significant strides in understanding and treating HS.
Conclusion
The HS PROGRESS study represents a beacon of hope for those affected by Hidradenitis Suppurativa. By fostering collaboration and leveraging comprehensive data collection, this initiative has the potential to transform the landscape of HS treatment and significantly improve patient outcomes.
