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PERSPECTIVE article
Front. Immunol.
Sec. Primary Immunodeficiencies
Volume 15 - 2024 |
doi: 10.3389/fimmu.2024.1456769
This article is part of the Research Topic Enhancing Early Detection of Primary Immunodeficiencies (PIDs) View all 4 articles
Newborn Screening for Severe Combined Immunodeficiency in Malaysia: Current Status, Challenges and Progress
Provisionally accepted- 1 Department of Pediatric, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
- 2 Research Center, Hospital Tunku Ampuan Besar Tuanku Aishah Rohani, Universiti Kebangsaan Malaysia (UKM) Specialist Children’s Hospital, Kuala Lumpur, Malaysia
- 3 Malaysia Patient Organization for Primary Immunodeficiencies (MYPOPI), Shah Alam, Selangor, Malaysia
- 4 Allergy and Immunology Centre, Pantai Hospital Kuala Lumpur, Kuala Lumpur, Malaysia
- 5 Sunway Centre for Planetary Health, Sunway University, Petaling Jaya, Selangor Darul Ehsan, Malaysia
- 6 Allergy and Immunology, Gleneagles Hospital, Kuala Lumpur, Malaysia
- 7 Clinical Immunology Unit, Department of Paediatrics, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, Serdang, Malaysia
- 8 Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, Kepala Batas, Pulau Pinang, Malaysia
- 9 Pediatric Infectious Disease and Immunology Unit, Department of Pediatric, Hospital Tunku Azizah, Kuala Lumpur, Malaysia
- 10 Cancer Research Centre, Institute for Medical Research (IMR), National Institutes of Health (NIH), Shah Alam, Selangor Darul Ehsan, Malaysia
- 11 Allergy and Immunology Research Centre, Institute for Medical Research (IMR), National Institutes of Health (NIH), Shah Alam, Selangor Darul Ehsan, Malaysia
- 12 Department of Medical Microbiology and Immunology, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
- 13 Department of Pediatrics, Columbia Asia Hospital Bukit Jalil, Kuala Lumpur, Malaysia
- 14 Department of Pediatrics, Hospital Enche Besar Hajjah Khalsom, Kluang, Johor, Malaysia
- 15 Institute of IR4.0, Universiti Kebangsaan Malaysia, Bangi, Malaysia
- 16 Infection and Immunology Health and Advanced Medicine Cluster, Universiti Kebangsaan Malaysia, Cheras, Kuala Lumpur, Malaysia
Introduction: Early diagnosis of Severe Combined Immunodeficiency (SCID) increases survival outcomes and quality of life while significantly minimizing healthcare burden and costs. Despite growing evidence supporting the benefits and cost-effectiveness of SCID detection through newborn screening (NBS), it has yet to be implemented in Malaysia. This study aims to explore experts’ opinions on the current status, challenges, and crucial strategies needed for the successful implementation of SCID NBS. Methodology: A guided, structured interview was employed to explore opinions on the current status, barriers, and strategies for implementing SCID NBS in Malaysia. All 13 invited experts participated in this study, indicating complete participation from the entire Malaysian immunology fraternity (consisting of eight clinical immunologists and five immunopathologists). Key Findings: Several initiatives are ongoing to establish SCID NBS in Malaysia. Hindrances such as low immunologist-to-patient ratio, unequal placements of immunologists throughout Malaysia, society’s low disease awareness, national health prioritization, lack of stakeholder engagement, and inadequacy of local study/data were highlighted. Pilot research on SCID NBS, advocacy workshops, and promotion materials are among the ongoing activities outlined in the blueprint, paving the way for this nationwide NBS program to be achievable in the near future. Conclusion: This article provides recommendations to policymakers in mandating SCID NBS. Strategies by key stakeholders are underway, particularly in advocacy programs and efforts to increase awareness among clinicians and the public.
Keywords: neonatal, immunodeficiency, implementation, Malaysia, strategy, advances, barriers
Received: 29 Jun 2024; Accepted: 09 Sep 2024.
Copyright: © 2024 Chang, Mohd Noh, Abdul Latiff, Woo, Ismail, Abd Hamid, Siniah, Zainal Abidin, Sham, Mat Ripen, Baharin, Abdul Wahab, Zainudeen, Hashim, Wong, Ahmad Shawaludin and Ali. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence:
Adli Ali, Department of Pediatric, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
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