Document is current

Article History

Received: 16 January 2026

Accepted: 26 March 2026

First Online: 18 April 2026

Declarations

:

: Alyssa Bowling, Genevieve Lyons, and Theresa Dettling are employees of Alexion, AstraZeneca Rare Disease, and may own stock or stock options in Alexion, AstraZeneca Rare Disease. Ashwin Anand, Michael Sicilia, and Wouter van der Pluijm are employees of Forian Inc. and may hold stock or stock options in Forian Inc. Benjamin Guikema was an employee of Alexion, AstraZeneca Rare Disease at the time of study, and may own stock or stock options in Alexion, AstraZeneca Rare Disease. Benjamin Guikema is presently an employee of KalVista Pharmaceuticals, Inc., and may own stock or stock options in KalVista Pharmaceuticals, Inc. Julia Meade has received consulting fees from Alexion, AstraZeneca Rare Disease, HMP Omnimedia, Revhealth, and Distance Learning Network and has received payment for travel from The Children’s Oncology Group.

: This retrospective observational study utilizes data products licensed from Forian Inc. that include patient-level data de-identified in compliance with the federal privacy and security rules of the Health Insurance Portability and Accountability Act of 1996, as amended (“HIPAA”), including by the Health Information Technology for Economic and Clinical Health Act and any implementing regulations issued by the U.S. Department of Health and Human Services pursuant thereto, and the regulations published thereunder at 45 CFR Parts 160, 162, and 164, as may be amended from time to time, known as the Standards for Privacy of Individually Identifiable Health Information (“Privacy Rule”) and the Security Standards (the “Security Rule”, and together with the Privacy Rule, the “HIPAA Regulations”), as certified by the determination of a qualified expert in accordance with Section §164.514(b)(1) of the Privacy Rule. At the time of the analysis yielding the study, Forian’s CHRONOS data product included healthcare claims data from over 300 million de-identified patients receiving care in the US between 2017 and 2023. This study utilizes only de-identified patient-level data and was therefore exempt from Institutional Review Board approval.