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

作者信息

Kamfar Sharareh, Alavi Samin, Eshghi Peyman, Tabatabaei Morteza, Taherian Reza

机构信息

Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children's Health, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Department of Biostatistics, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

出版信息

Ann Med Surg (Lond). 2025 Jul 16;87(8):4777-4784. doi: 10.1097/MS9.0000000000003586. eCollection 2025 Aug.


DOI:10.1097/MS9.0000000000003586
PMID:40787535
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12333748/
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.

摘要

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本文引用的文献

[1]
Thrombosis in Children: A Retrospective Study from a Single-center Database.

In Vivo. 2025

[2]
Mechanical thrombectomy by stent retriever for the treatment of arterial ischemic stroke in a pediatric patient with acute lymphoblastic leukemia: a case report.

Ann Med Surg (Lond). 2024-10-21

[3]
Arterial stroke in a child with Seckel syndrome with a pattern of non-moyamoya vasculopathy.

Clin Case Rep. 2024-5-7

[4]
A Comprehensive Review of Risk Factors and Thrombophilia Evaluation in Venous Thromboembolism.

J Clin Med. 2024-1-9

[5]
Development and evaluation of a customized checklist to assess the quality control of disease registry systems of Tehran, the capital of Iran in 2021.

BMC Health Serv Res. 2023-7-4

[6]
The new Italian registry of infantile thrombosis (RITI): A reflection on its journey, challenges and pitfalls.

Front Pediatr. 2023-4-20

[7]
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. 2021-4

[8]
Heart Disease and Stroke Statistics-2019 Update: A Report From the American Heart Association.

Circulation. 2019-3-5

[9]
Recommendations for Improving the Quality of Rare Disease Registries.

Int J Environ Res Public Health. 2018-8-3

[10]
A multi-institutional registry of pediatric hospital-acquired thrombosis cases: The Children's Hospital-Acquired Thrombosis (CHAT) project.

Thromb Res. 2017-12-1

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