A National Primary Immunodeficiency Registry for Malaysia: A Systematic Review and Evidence-Based Implementation...

Area of Science:

• Immunology
• Public Health
• Health Informatics

Background:

• Accurate surveillance, equitable care, and effective health policy for primary immunodeficiencies (PIDs) rely on national data infrastructure.
• Malaysia currently lacks a national PID registry, creating a significant public health data gap.
• This gap hinders disease burden estimation, resource planning, and patient outcome improvement.

Purpose of the Study:

• To systematically review global literature on PID data management barriers and identify solutions.
• To develop an evidence-based framework for a national PID registry in Malaysia.
• To address system-level challenges in PID data management.

Main Methods:

• Systematic review of 3 major databases (Web of Science, Scopus, PubMed) from 2015-2025.
• Adherence to Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines.
• Narrative thematic analysis to identify barriers and inform registry framework development.

Main Results:

• Forty-one studies from 15 countries highlighted underdiagnosis, diagnostic delays, fragmented systems, and low professional awareness as key issues.
• Absence of national registry infrastructure exacerbates these challenges.
• A proposed framework includes a Minimum Data Set, multidisciplinary governance, secure technical infrastructure, and audit mechanisms.

Conclusions:

• A national PID registry in Malaysia is feasible through phased implementation.
• Such a registry would significantly enhance disease surveillance, facilitate collaborative research, and inform health policy.
• Implementing a registry can translate the current data gap into improved population-level health outcomes.