The Cutaneous Connection: New ICD-10 Code Offers Validation for Patients With Topical Steroid Withdrawal

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In the most recent episode of the Derm Dispatch video series, host Renata Block, DMSCc, MMS, PA-C, a Chicago-based physician assistant, interviewed Kelly Barta, the president and executive director of the International Topical Steroid Awareness Network (ITSAN), to discuss the new ICD-10 code for topical steroid withdrawal and ITSAN's patient registry.

"This ICD-10 approval by CDC just happened earlier this year, and it was such a huge shot in the arm for the patient community," Barta said.

ICD-10 Code Brings Validation and Research Opportunity

The ICD-10 code for TSW went through 3 formal reviews with the CDC and a split board vote before receiving final approval, with support from the American Academy of Dermatology. Barta said the designation gives patients a formal diagnosis within the health system for the first time and allows researchers to begin capturing incidence and prevalence data.

"Not only is this really going to help with research and reporting, but also with coverage for patients," Barta said, noting many patients with TSW cannot work, attend school, or care for their families during flares.

A Patient Registry to Study TSW Worldwide

ITSAN spent 4 years developing a patient registry with a steering committee of clinicians, researchers, and patient advocates. The registry is IRB-approved and includes 14 surveys examining medical history, steroid use, and outcomes after discontinuation. It launched in December 2025 on the National Organization for Rare Disorders' IAmRare platform and has enrolled about 500 of a targeted 5000 participants globally.

Barta said the international scope allows ITSAN to look for regional patterns, including topical steroid use in skin-lightening products in parts of Africa and India. She added the data may help clarify how TSW differs from severe eczema.

Addressing Steroid Hesitancy in the Exam Room

Barta cited a National Eczema Association and National Psoriasis Foundation survey finding more than half of patients feel uneasy discussing steroid use with their clinician. She pointed to terminology as a common source of distrust, saying words like "misuse" or "abuse" can feel like blame to patients who followed a clinician's instructions.

"To use terms that don't put blame, but just try to talk about it as this is something we're learning about in real time... that will take the temperature down and allow for a real conversation," Barta said.

Opportunities for Dermatologist Partnership

Barta encouraged clinicians to direct patients who suspect they have TSW to the ITSAN patient registry and to itsan.org, which includes a physician resource section and a closed patient Facebook group of more than 30,000 members. ITSAN is also hosting the Healing the Skin We're In Summit July 24 and 25 at the Maison Event Center in Duluth, Georgia, with a Friday track for dermatologists, physician assistants, and nurses to review current TSW science alongside the patient community.

Barta said the summit and registry both depend on continued collaboration between advocacy groups and dermatology clinicians to close remaining gaps in understanding the condition.