University of California, San Francisco and Rockefeller University, New York investigators summarize the imperative of Hidradenitis Suppurativa research. What follows is their abstract and below link to the source.
There is a dearth of high-level evidence guiding our understanding of the epidemiology, pathophysiology, and treatment of hidradenitis suppurativa (HS). Despite an estimated prevalence of 1% in Western populations and quality of life impairment often exceeding other chronic skin diseases, annual HS-related publications lag far behind annual publications for other common and rare skin diseases. Federal funding to study HS wanes in comparison to funding for other chronic cutaneous dermatoses, with only 0.1% of the National Institute of Arthritis and Musculoskeletal and Skin Diseases total research funds for skin diseases dedicated to HS.
By December 31, 2018, only 17 clinical trials dedicated to HS had been completed in the United States and there is only 1 US Food and Drug Administration (FDA)-approved therapy for HS, compared with numerous trials and nearly a dozen currently FDA-approved systemic medications for psoriasis. The paucity of HS medical knowledge and effective therapies have contributed to patient distrust of the medical community and subsequent reluctance to seek medical care. Partnership with patients in research and clinical care is desperately needed to meaningfully improve the lives of people suffering from HS.
TrialSite News can attest to the distrust of the medical and provider community. We have touched on the topic of Hidradenitis Suppurativa with great interest. Patient communities seek answers and not necessarily powerful immunosuppressant drugs that can have significant to potentially dangerous side effects. We provide a link to one of our articles here that showcased the potential of one treatment that generated a lot of response. In another literature review, we received even more response (pro and con) in terms of approaches, investigational pipelines and even dietary and lifestyle changes.
Haley B Naik, MD, MHSc, UCSF
Michelle A. Lowes, MBBS, Ph.D., Rockefeller University, NY