Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Jul 16;87(8):4777-4784.
doi: 10.1097/MS9.0000000000003586. eCollection 2025 Aug.

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

Sharareh Kamfar  1 , Samin Alavi  1 , Peyman Eshghi  1 , Morteza Tabatabaei  1 , Reza Taherian  2
Affiliations

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

Sharareh Kamfar et al. Ann Med Surg (Lond). .

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.

PubMed Disclaimer

Conflict of interest statement

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article. The authors confirm that there are no conflicts of interest related to this study.

References

    1. Benjamin EJ, Muntner P, Alonso A, et al. Heart disease and stroke statistics—2019 update: a report from the American Heart Association. Circulation 2019;139:e56–e528. - PubMed
    1. Sava C, Iuhas A, Balmoș A, et al. Thrombosis in children: a retrospective study from a single-center database. In Vivo 2025;39:473–81. - PMC - PubMed
    1. Næss IA, Christiansen SC, Romundstad P, et al. Incidence and mortality of venous thrombosis: a population-based study. J Thromb Haemost 2007;5:692–99. - PubMed
    1. van Ommen CH, Albisetti M, Bhatt M, et al. International pediatric thrombosis network to advance pediatric thrombosis research: communication from the ISTH SSC subcommittee on pediatric and neonatal thrombosis and hemostasis. J Thromb Haemost 2021;19:1123–29. - PMC - PubMed
    1. Yang JY, Chan AK. Pediatric thrombophilia. Pediatric Clinics 2013;60:1443–62. - PubMed

LinkOut - more resources