On Oct. 30, 2024, the American Academy of Dermatology (AAD) announced a new initiative to shed light on hidradenitis suppurativa (HS). In a press release, AAD President Dr. Seemal R. Desai said that patients with HS 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 Dr. Desai. “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.”
For this project, the AAD will utilize data on more than 63 million anonymized patient encounters within DataDerm’s clinical data registry paired with data analytics company OM1’s AI-based Patient Finder™ tool to gain new insights into the patient journey for HS. According to the release, this initiative, supported by Novartis, will help dermatologists identify patients earlier, improving diagnosis, coordination of care, documentation, and screening for disease severity.
“We are incredibly excited by this project,” said Dr. Steven Daveluy, 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 seven to ten 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 one in 100 people worldwide. HS isn’t rare, it’s just rarely talked about,” said Dr. Anthony Yadao, vice president of Immunology Medical Affairs, Novartis U.S. “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 to increase clinician competence and confidence in the diagnosis and appropriate treatment of these patients and educating the public about this complex and stigmatizing condition.
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