Hidradenitis suppurativa (HS) is one of those skin conditions that can be both debilitating for patients and difficult for physicians to recognize, particularly nondermatologists. Many people with HS endure years of confusion and misdiagnosis because symptoms overlap with those of other skin diseases.

A collaborative initiative underway at the American Academy of Dermatology, and among dermatologists with HS expertise and the OM1 outcomes management company, is addressing this problem. The aim is to identify a constellation of symptoms that raise suspicion for HS; increase awareness among dermatologists, primary care physicians, and other clinicians; and launch a quality improvement project that puts those insights into action.

The need is urgent, dermatologists say. “It’s a very challenging disease. We know that it impacts people’s sleep, their intimacy, their sexual function, and their employment rates,” Steven Daveluy, MD, professor of dermatology, Wayne State University, Detroit, said at the American Academy of Dermatology (AAD) 2026 Annual Meeting. “Patients with HS also experience higher rates of depression, anxiety, and then — of course — the worst outcome: the risk of suicide is also higher that than seen in other patients.”

In addition, early identification can mean intervening during the “window of opportunity” before progression to scarring and tunneling, Daveluy said. “We’ve got to intervene early, but that means we have to find these undiagnosed patients and get them diagnosed. That’s where this project comes in.”

Data-Driven Diagnoses

The evidence for fine-tuning the differential diagnosis of HS comes from two large data sources: the AAD DataDerm clinical data registry and AI-driven information from OM1. The experts hope AI will help identify at-risk patients earlier.

Since it was launched in 2014, DataDerm has grown to include information from more than 6000 physicians at more than 1600 dermatology practices. OM1 contributes clinical data from outside dermatology to provide a more complete picture of each patient’s journey before they engage with a dermatologist. OM1 uses an AI research tool called Patient Finder that helps identify patients with HS based on clinical clues from 63 million de-identified patient encounters.

The AAD Hidradenitis Insights Initiative is being deployed in three phases. The first phase uses AI to identify clinical and demographic factors associated with a higher odds of HS from these large data sources. The second phase focuses on awareness and education, and the AAD is spearheading multiple educational initiatives highlighting HS, including a Question of the Week self-assessment, an episode of the Dialogues in Dermatology podcast, and Clinical Community posts.

The collaborators just started work on phase three: a quality improvement project rolling out to multiple dermatology practices to put the findings into action.

Some Surprising Findings

An initial group of patients screened for HS using the platform performed well across different age groups, demographics, and geographic regions in identifying people with undiagnosed HS, Daveluy said. “We found some of the things you would expect to see, like skin abscesses,” he added. But the technology also revealed some surprising findings, including a signal that patients with HS get more upper respiratory infections than patients without HS, “which was kind of a surprise to us.”

This association was a history of acute sinusitis or acute bronchitis with pharyngitis, said Julia Mhlaba Riley, MD, assistant professor of dermatology at Feinberg School of Medicine, Northwestern University, Chicago. She added the mechanism is unclear, “so further research is really needed into this area.”

Another surprise was that 92% of the patients were women, a higher proportion than previous estimates of about 75%, Riley said at the meeting. “We all know that men get HS too, but really, this is a condition that’s very common in women.”

The fairly uniform geographic distribution of patients with HS across the US was also unexpected, Riley said. “We might expect our HS patients to be found more commonly in areas with warmer climates.”

Factors Beyond Dermatology

“You really want to be asking patients about common HS symptoms, especially if we see a note about an abscess in a patient’s history,” Riley said. Other factors linked to HS in patient histories include current cutaneous abscesses, sweat gland disorders, carbuncles, and furuncles.

Some clinical correlations are not typically managed by dermatologists. For example, obesity is also closely linked to HS, Riley said. However, about one third of patients with HS had a normal BMI, “so we know that HS can relate to obesity, but a lack of obesity does not rule out HS.”

“Interestingly, there were several nonspecific or nonclassic skin complaints that were also important predictors on their own,” Riley said. Diagnoses like severe acne, cellulitis, as well as the use of topical medications to treat dermatitis, were strong signals for HS. Dermatologists should consider “a patient with recurrent cellulitis or treatment-resistant dermatitis in the context of other clues as a potential marker of early HS,” she noted.

A history of recurrent or chronic pain was another red flag. In addition, Riley said, “repeated STI [sexually transmitted infection] testing showed up as an indicator, and that’s possibly because…HS can be mistaken for sexually transmitted infections. So we really want to be asking our patients about genital symptoms.”

Not all symptoms are physical, she added. “We also know anxiety and depression co-occur with HS. The analytics showed that these conditions can also be significant diagnostic indicators of unrecognized HS, especially when combined with other signals.”

Group Effort at the AAD

The Academy’s involvement goes beyond DataDerm insights, said Caryn Etkin, PhD, MPH, director of Clinical Registries at AAD. This initiative involves multiple AAD departments, including corporate partnerships, education, registries, marketing and communication, and IT.

The focus now is increasing clinician competence and confidence regarding the various treatment options for HS, Etkin said. Recent HS educational efforts have engaged 900 unique learners and more than 11,000 views or engagements. The AAD is updating HS guidelines, and dermatologists can view and comment on the draft version online.

In addition, the AAD has adapted patient-facing HS material.

Essential Quality Improvement Component

“A lot of times when people think of quality improvement, they picture very dry fishbone diagrams,” Martina J. Porter, MD, vice chair for research and academics in the Department of Dermatology at Beth Israel Deaconess Medical Center in Boston, said during the panel session on diagnosing HS at the AAD annual meeting.

Porter emphasized that the current quality improvement (QI) project is more engaging. “With quality improvement, we are demonstrating that the interventions we implement can improve patient outcomes in the long run,” she said.

“We need timely recognition and diagnosis of HS, and this is not occurring in various practice settings,” added Porter, who is also chair of the AAD’s Patient Safety and Quality Committee.

Riley agreed. “We really want to be educating other providers, including primary care doctors and emergency medicine physicians, about the early signs and symptoms of HS,” she said.

Daveluy noted that patients with HS are now often self-diagnosing. “Then they seek medical care. This is where we need every physician out there to know what HS is so they can identify it.”

The aim is to scale up the best practices learned through this initiative beyond the initial 10 dermatology practices “so that any practice across the country could implement this intervention and improve outcomes,” Porter said.

Identifying patients who are suffering from delays in diagnosis and undertreatment and tracking measurable outcomes are aims of the QI project.

Looking Forward

Etkin reported that the AAD is just getting started, with more HS educational opportunities planned for 2026 and beyond. “We’re really in an exciting phase here,” she said.

Riley is looking forward to gaining more insights from the AI component. The technology may help dermatologists optimize earlier treatment for patients with HS, she said.

For Daveluy, working on the HS awareness initiative ultimately comes back to the patients. In addition to long delays for an accurate diagnosis, HS can be misdiagnosed as infections or STIs, so people may experience shame, stigma, and frustration. “It just leaves patients really hopeless. That’s why when they come to us, they’re already a little jaded. They get stuck in that cycle of seeing people and engaging with the medical system, but no one knows what they have.”

The HS initiative is supported by Novartis. Daveluy disclosed serving on the advisory board of AbbVie and Incyte; as a consultant to AbbVie and UCB; an investigator for Insmed, MoonLake Immunotherapeutics, Pfizer, Regeneron, Sanofi and UCB; and a speaker for AbbVie, Novartis, and UCB. Riley disclosed being an investigator for AbbVie, Incyte, MoonLake, and Novartis; and serving on the advisory board for UCB. Porter disclosed serving as a consultant for companies including AbbVie, Alumis, Arcutis, Eli Lilly, and Novartis, Incyte, MoonLake; an investigator for companies including AbbVie, AnaptysBio, Arcutis, Bristol Myers Squibb, MoonLake, Novartis, and other pharmaceutical companies. Etkin had no disclosures.

Damian McNamara is a freelance contributor to Medscape Medical News. He worked full-time for Medscape and WebMD from 2018 to 2024. Damian has a BA in chemistry and an MA in science, health, and environmental reporting/journalism.