Newswise — ROSEMONT, Ill. (Oct. 30, 2024) — A new initiative by the American Academy of Dermatology aims to shed light on an often misunderstood and debilitating condition, hidradenitis suppurativa (HS). HS is a chronic progressive condition that can cause painful and boil-like bumps, particularly in a patient’s armpits, thighs, and groin. Patients are often misdiagnosed or undiagnosed for years, which can lead to scarring, pain, and impaired mobility.

“This is an often-misunderstood disease and patients who suffer from it face not just physical pain but frequently suffer from depression and self-esteem issues. Many affected individuals also face challenges with activities of daily living, including work, and a significant proportion suffer from disability,” said AAD President Seemal R. Desai, MD, FAAD. “As the leading organization in dermatology with a mission to end suffering from skin disease, the AAD has an incredible opportunity to make a life-changing difference for these patients.”

The AAD will leverage more than 63 million deidentified patient encounters within DataDerm’s clinical data registry paired with OM1’s AI-based Patient Finder tool to gain new insights into the patient journey for hidradenitis suppurativa. This project, which is possible thanks to support from Novartis, will help dermatologists to identify patients earlier, improving diagnosis, coordination of care, documentation, and screening for disease severity. “We are incredibly excited by this project,” said Steven Daveluy, MD, FAAD, chair of the expert advisory panel leading the project for AAD. “There is a ‘window of opportunity’ for treatment for patients with HS, and we are currently missing it for many patients, who may wait 7-10 years for a diagnosis, if they receive the right diagnosis at all. This project will have a dramatic impact for these patients.”

“HS is a chronic, inflammatory disease that may impact as many as 1 in 100 people worldwide. HS isn’t rare, it’s just rarely talked about,” said Anthony Yadao, MD, vice president of Immunology Medical Affairs, Novartis US. “Novartis is proud to partner with the AAD on this important initiative to bring data-driven insights and educational materials about HS into clinical practice, and hopefully, contribute to earlier diagnosis rates for people who are undiagnosed but suffering from HS symptoms.”

“We are thrilled to collaborate with the AAD in this groundbreaking initiative to address the challenges faced by patients with hidradenitis suppurativa. With our Patient Finder tool powered by our AI-based PhenOM® platform, we look forward to accelerating diagnosis, clinician awareness, and patients' access to care in this often-overlooked condition,” said Joseph Zabinski, PhD, vice president of AI & Strategy at OM1.

Based on insights gathered in the first phase of this project, the AAD will develop a range of educational resources for physicians aimed at increasing clinician competence and confidence in the diagnosis and appropriate treatment of these patients as well as educating the public about this difficult and stigmatizing condition.

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About the AAD

Headquartered in Rosemont, Ill., the American Academy of Dermatology, founded in 1938, is the largest, most influential and most representative of all dermatologic associations. With a membership of more than 21,000 physicians worldwide, the AAD is committed to advancing the diagnosis and medical, surgical, and cosmetic treatment of the skin, hair, and nails; advocating high standards in clinical practice, education and research in dermatology; and supporting and enhancing patient care because skin, hair, and nail conditions can have a serious impact on your health and well-being. For more information, contact the AAD at (888) 462-DERM (3376) or aad.org. Follow @AADskin on FacebookPinterest and YouTube and @AADskin1 on Instagram.