Hereditary angioedema: do patients have a specific "digital fingerprint" in Danish registries?

Introduction: Hereditary angioedema (HAE) is a potentially life-threatening genetic disorder characterized by recurrent episodes of angioedema. From the onset of symptoms until diagnosis, patients often have several contacts with the healthcare system. It was hypothesized that a "digital fingerprint" of undiagnosed HAE patients could be identified in Danish registries.

Methods: This study compared patients with a control group of patients with a diagnosis of Quincke's edema (QE) or bee/wasp allergy because they could have phenotypic similarities.

Results: QE was the most common diagnosis code in the hospital sector among HAE patients before a specific diagnosis of HAE was established. HAE patients had been seen at the hospital on average once every other year before the diagnosis was established, and on average once during the year before the diagnosis was established. Many patients contacted a practicing dermatologist during the year before the diagnosis was established.

Conclusions: HAE patients had several hospital contacts due to swelling attacks during the years before their diagnosis was established, and half of them consulted a dermatologist. It was not possible to identify a specific "digital fingerprint" in Danish registries regarding specific procedures or diagnoses distinguishing them from the control group. It is therefore recommended that hospitalized patients with angioedema of unknown cause be screened for HAE.