What is it about?
Primary immunodeficiencies (PIDs) are rare disorders whose accurate surveillance, equitable care, and effective health policy depend on robust national data infrastructure. Malaysia lacks a national PID registry, creating a critical public health data gap that impedes disease burden estimation, resource planning, and patient outcomes. This systematic review searched 3 major electronic databases (Web of Science Core Collection, Scopus, and PubMed) for the period 2015-2025, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines with narrative thematic analysis identified system-level barriers to PID data management and developed an evidence-based registry framework to address them. Forty-one global studies from 15 countries (including 8 from Malaysia) revealed that underdiagnosis, diagnostic delays, fragmented data systems, and limited professional awareness compound the absence of national registry infrastructure. The proposed framework integrates a Minimum Data Set aligned with International Union of Immunological Societies classification, multidisciplinary governance, secure role-based technical infrastructure, automated validation, and audit mechanisms covering demographics, clinical, diagnostic, treatment, and outcome domains. A national PID registry in Malaysia is feasible through phased implementation, and would meaningfully strengthen disease surveillance, enable collaborative research, and inform health policy, thus translating a documented data gap into improved population-level outcomes.
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Why is it important?
Without a national registry, Malaysia has no reliable way to estimate how many people actually have PIDs, plan healthcare resources around their needs, or track whether patients are getting good outcomes, meaning policy and funding decisions are being made without solid data. Because PIDs are rare and easily mistaken for more common illnesses, they're also more prone to diagnostic delay, which makes systematic tracking even more critical for catching cases earlier. This study is significant because it doesn't just point out the data gap, it draws on international evidence to translate that gap into a specific, implementable framework tailored to Malaysia's health system, which gives policymakers something concrete to act on rather than an abstract recommendation.
Perspectives
This is solid, necessary groundwork where rare disease policy tends to lag precisely because the data infrastructure needed to justify investment doesn't exist yet, so building the case through a rigorous, PRISMA-guided review is the right first step. I think the framework's emphasis on multidisciplinary governance and integration (rather than just a data collection form) is a meaningful strength, since registries often fail not from lack of data fields but from poor buy-in across departments and hospitals. That said, I'd want to know how the "phased implementation" is expected to handle the underdiagnosis problem specifically, since a registry inherently only captures diagnosed cases, meaning the true disease burden could remain invisible even after the registry launches, unless it's paired with efforts to improve diagnostic capacity and awareness among frontline clinicians in tandem.
Mr. Lee Wei Chang
University of Malaya
Read the Original
This page is a summary of: A National Primary Immunodeficiency Registry for Malaysia: A Systematic Review and Evidence-Based Implementation Framework, Asia Pacific Journal of Public Health, July 2026, SAGE Publications,
DOI: 10.1177/10105395261465729.
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