‘Enhance the knowledge’: Organizations launch first global hidradenitis suppurativa report

Key takeaways:

• The goal of this report is to bring better understanding of hidradenitis suppurativa to health care providers and the public.
• Global data will be collected from approximately 50 countries across six continents.

The Global Hidradenitis Suppurativa Atlas has produced a report offering the first global data on the diagnosis, impact and treatment of hidradenitis suppurativa, according to a press release.

“HS is a devastating disease because it has very significant quality of life as well as economic burden,” Henry W. Lim, MD, president of the International League of Dermatological Societies (ILDS) and senior vice president of academic programs at Henry Ford Health, told Healio. “Not a lot of health care providers may be aware of this particular disease because it’s not very visible. In fact, it’s not visible at all.”

According to Lim, HS mainly presents in the armpit, buttock and groin area, making it an easy-to-hide disease. However, the hidden nature of this disease does not negate the fact that it is an incredibly painful and burdensome condition.

“This condition is very devastating,” Lim continued, “with some patients taking hours in the morning to get dressed just to make sure that they’re properly bandaged up in affected areas.”

According to Lim, reports on the prevalence of this disease have emerged mainly from the U.S. and Europe. As some reports have begun being generated from other parts of the world, the Global Hidradenitis Suppurativa Atlas (GHiSA) has set out to compile these reports into one.

The publication has announced the launch of a three-phase project to explore the gaps, barriers and issues limiting a greater understanding of its global epidemiology, including the lack of HS prevalence worldwide, diagnostic delays and the impact of demographic factors. Additionally, the report strives to provide further information on emerging treatments to bolster global efforts toward disease management.

“Ultimately, the goal of this report is to enhance the knowledge of health care providers as well as the public,” Lim echoed.

According to the press release, phase 1 of the project will focus on gathering prevalence data from approximately 50 countries across six continents.

“At this time, we know anecdotally that this disease is more common in the U.S. and Europe,” Lim said. “In fact, I just came back from China and it’s not common there at all. But that is something that I think we need to find out with true epidemiologic data.”

After collecting these data, the organization will launch phase 2 to develop core criteria that can be used in future epidemiological studies.

In phase 3, GHiSA will conduct additional epidemiological studies on HS to uncover the phenotype, genotype, environmental factors, lifestyle habits and comorbidities associated with this disease, according to the release.

This project is being produced in collaboration with and with the support of the ILDS, which is the only dermatological society that has official relations with the WHO, according to Lim.

“We can directly interact with different units within the WHO that deals with multiple diseases including topical diseases,” Lim said.

Within the WHO, HS falls under noncommunicable diseases, as it is not infectious. However, due to the immense burden of this disease which has sometimes led to suicidal tendencies, the GHiSA and ILDS believe it is important to bring it to the attention of the WHO.

“This is a disease with significant psychological and economic impact,” Lim told Healio. “We want to bring to the attention of the WHO that focusing on this disease is very important for patients and society.”

The report is available to download for free on the WHO Knowledge Action Portal on NCDs.