Creating a National Pediatric Thrombosis Registry: a cohort prospective study by the Iranian Society of Thrombosis and Hemostasis

Abstract

Background: Venous thromboembolism (VTE) in pediatric populations, though historically rare, is increasingly recognized due to improved diagnostic methods and heightened clinical awareness. Pediatric VTE presents distinct epidemiological patterns, risk factors, and clinical challenges compared to adults, necessitating specialized approaches in both research and clinical practice.

Objective: This manuscript outlines the development and implementation of the Iranian Pediatric Thrombosis Registry (IPTR), the first national registry dedicated to systematically collecting data on thromboembolic events in children across Iran.

Methods: Initiated by the Iranian Society of Thrombosis and Hemostasis (IRSTH) and approved by the Shahid Beheshti University of Medical Sciences, the registry was developed through a multi-phase process involving strategic planning, stakeholder engagement, and rigorous data governance. A scientific committee led the design of a standardized minimum data set (MDS), ensuring data consistency, relevance, and interoperability. Emphasis was placed on quality control through structured audits and expert review.

Results: The registry was launched in a tertiary pediatric center in Tehran, capital of Iran, and subsequently extended nationwide through outreach to academic and private healthcare institutions. The IPTR aims to document risk factors, treatment strategies, outcomes, and complications in pediatric VTE cases, supporting evidence-based practice and fostering international collaboration.

Conclusion: The establishment of the IPTR marks a critical step in addressing the growing burden of pediatric thrombosis in Iran. By providing high-quality, structured clinical data, the registry is poised to inform national guidelines, support clinical research, and ultimately enhance patient care and safety in pediatric populations.

Keywords: arterial thrombosis; computer based; data registry; pediatric stroke; venous thromboembolism.