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Population-Based and Routinely Collected Health Data Studies of Immunobullous Diseases: A Scoping Review.

Heather J Zhao¹, Vince Wu¹, Michelle Gandelman¹

¹Faculty of Medicine, University of Toronto, ON, Canada.

Journal of Cutaneous Medicine and Surgery

|April 25, 2026

Summary

Most autoimmune blistering disease (AIBD) studies use administrative codes, not validated definitions. Standardizing validation is key for accurate AIBD epidemiology research.

Keywords:

immunobullous pemphigoid pemphigus routinely collected data validation

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Area of Science:

Dermatology
Epidemiology
Health Informatics

Background:

Validated case definitions are crucial for reliable epidemiological research using routinely collected health data.
Variability in case definitions for autoimmune blistering diseases (AIBDs) may limit the generalizability of findings.

Purpose of the Study:

To describe AIBD definitions used in population-based epidemiologic studies.
To determine if these definitions have been validated.

Main Methods:

Searched MEDLINE and Embase for epidemiologic studies on pemphigoid, pemphigus, dermatitis herpetiformis (DH), epidermolysis bullosa acquisita (EBA), and linear IgA bullous dermatosis (LABD).
Included studies reporting case definitions using routinely collected data.
Two reviewers independently screened studies and extracted data.

Main Results:

Ninety-two studies met inclusion criteria.
Most studies for pemphigoid and pemphigus used International Classification of Diseases (ICD) codes or electronic medical records.
Few studies reported validated case definitions, with validation methods varying across AIBDs; EBA and LABD studies lacked formal validation.

Conclusions:

Population-based AIBD studies predominantly use administrative coding or electronic medical records, with limited use of formally validated case definitions.
Improving and standardizing validation practices is essential to enhance the accuracy and comparability of epidemiological findings in AIBDs.