Partnership Leads to New and Unique Registry for HAE Patients

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by Mary Chapman |

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A new hereditary angioedema (HAE) registry, touted as the first of its kind, is using real-world data to provide comprehensive insights into patients’ journeys.

The Trio-CIIC HAE Registry derives from a partnership between real-world data provider Trio Health and the Consortium of Independent Immunology Clinics (CIIC), a professional organization of board-certified U.S. allergists and immunologists who provide care, participate in research, and advocate for patients and physicians.

For the registry, Trio’s real-world data platform quickly “converts structured and unstructured data” from electronic medical records, such as physician notes, lab and radiology reports. This results in broad insights into the HAE patient experience, including from the patient’s perspective.

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“The data allows us better visibility into this rare patient population, previously thought unanswerable, and keeps the patient at the center of this research,” Jane M. Quigley, Trio Health’s chief operating officer, said in a press release.

Specifically, Trio provides real-world, fit-for-purpose therapeutic data services, including real-time longitudinal data, persistency and compliance, retrospective patient data, and social determinants of health, as well as swift identification of patients for clinical studies.

Currently, the registry comprises 419 HAE patients, who each provide an average of 5.1 years of clinical data, including 3,000 physician notes from office visits. Such notes cover HAE swelling attacks, treatment decisions, and patient-reported outcomes.

“Our plan is to increase the HAE patient registry beyond 500 patients from 15 of our private practice CIIC sites in the coming months, collecting deep clinical insights across a geographically diverse organization,” Jason Raasch, MD, CIIC’s president, said.

The overall registry goal is to produce regulatory-grade evidence and insights to support patients, providers, and biopharmaceutical companies. In general, patient registries seek to help scientists better understand a particular condition, establish best practices, and, at length, find a cure.

“This is a comprehensive, representative and inclusive patient registry, allowing us to refine ‘best practices’ and promote a harmonized standard of care for HAE patients,” William Lumry, MD, CIIC member and medical director of the AARA Research Center in Dallas, Texas, said.

Thought to affect 1 in 50,000 to 150,000 individuals globally, HAE is a chronic genetic disorder marked by sudden, but temporary swelling attacks that affect the skin’s deeper layers. In severe cases, attacks can become life threatening and require prompt medical attention.