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Policy-Making for Establishing and Strengthening a National Registry of Congenital Heart Disease in Iran: A Policy Brief
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Seyyed Mohsen Sadatinejad    , Mohsen Taghadosi * |
| , Taghadosi_m@KAUMS.AC.ir |
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Abstract: (36 Views) |
Congenital heart disease (CHD) is the most prevalent congenital anomaly and one of the leading causes of infant mortality in Iran. Although substantial progress has been achieved in diagnostic and therapeutic approaches, the lack of a comprehensive, integrated, and nationwide system for registering and monitoring patients with CHD remains a major barrier to evidence-based health planning, equitable resource allocation, and effective evaluation of treatment outcomes. This policy brief outlines the magnitude of the problem, existing structural and informational gaps, and current fragmented approaches to CHD data collection in the country. It reviews successful domestic experiences with regional registries, including the PROVE/CHD registry in Isfahan and the TRoCA registry in Tabriz, and draws practical lessons from these models. The brief further presents actionable recommendations for policymakers, health system managers, healthcare providers, and the research community, emphasizing the establishment and sustained support of a standardized and unified national CHD registry. Such a registry would ensure systematic patient data capture, enable long-term follow-up, and support the generation of high-quality national evidence. The overarching goal is to develop a sustainable, technology-based framework that facilitates accurate data collection, improves equity in access to specialized care, strengthens quality improvement initiatives, and enhances evidence-informed decision-making across the Iranian health system. For the sustainable implementation of a national CHD registry within Iran’s healthcare system, the most rational approach is to adopt a phased, hybrid model. The initial phase should focus on the accurate collection of data in specialized centers, followed by the gradual integration of additional outpatient clinics and administrative/claims data in subsequent phases. Success in this multi-source registry approach would require policy support, insurance incentives, and mandatory participation of clinical centers.
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| Keywords: Congenital Heart Disease, Children, Registry, Health Policy, Epidemiology, Policy Brief |
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Type of Study: Policy Brief |
Subject:
medicine, paraclinic
Received: 2025/12/20 | Revised: 2026/02/3 | Accepted: 2026/01/18
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