About the SEA-ALS Group
The Southeast Asia ALS (SEA-ALS) Group was established to address the unique challenges of amyotrophic lateral sclerosis (ALS) in a region where healthcare resources, infrastructure, and access to therapies remain limited compared to other parts of the Asia–Pacific. While advanced ALS clinics and trial networks are expanding in higher-resource settings, many Southeast Asian countries continue to face delays in diagnosis, fragmented care pathways, and limited representation in international research.
Beyond health system challenges, ALS in Southeast Asia may also differ biologically. Emerging studies suggest that genetic variants and clinical phenotypes in Asian populations are not fully mirrored in Western cohorts. Limited availability of genetic testing and bioinformatics capacity further highlights the need to build collaborative research networks that can characterize the unique genetic profile of ALS in Southeast Asian patients.
Our Aims
- Address Distinctive Needs:Develop practical, scalable solutions for ALS care suited to resource-limited health systems.
- Strengthen Collaboration:Build cross-border partnerships to share expertise and reduce inequities across the region.
- Advance Research Capacity:Establish harmonized registries, promote genetic and epidemiological studies, and prepare sites for participation in global clinical trials.
- Improve Patient Care and Advocacy:Adapt international ALS guidelines into culturally relevant, accessible care models, while working with advocacy groups to reduce stigma and strengthen support for families.
- Build Sustainable Capacity:Train healthcare providers and researchers to expand ALS expertise in settings where specialist services are scarce.
By focusing on both the realities of resource-limited health systems and the unique genetic and clinical profile of ALS in Southeast Asian populations, the SEA-ALS Group seeks to ensure that patients and families in the region are not left behind as new treatments and standards of care emerge globally.
Members
Key representatives from South-East Asia countries include:
| Name | Country |
| Ahmad Yanuar | Indonesia |
| Sheila Agustini | Indonesia |
| Kongkiat Kulkantrakorn | Thailand |
| Jakkrit Amornvit | Thailand |
| Nortina Shahrizaila | Malaysia |
| Rabani Remli | Malaysia |
| Ohnmar Ohnmar | Myanmar |
| Mario Prado | Phillipines |
| Tu Quoc Le Tuan | Vietnam |
| Nghia Hoang | Vietnam |
| Dk Hjh Norazieda Pg Hj Mohd Yassin | Brunei |
| Pg Dr Hjh Nur’ashikin Pg Dato Paduka Hj Tengah | Brunei |
| Southanalinh KEOVILAYHONG | Laos |
| Arada Rojana-Udomsart | Thailand |
| Phyu Phyu Lay | Myanmar |
| Ludwig F. Damian | Phillipines |
| Josiah Chai | Singapore |
| Kay Ng | Singapore |
| Nurul Fadli | Indonesia |
| Nguyen Tran Minh Duc | Vietnam |
| Kristine Joyce L. Porto | Phillipines |
| Nicole Pang | Phillipines |
Focus Area
Our current priorities include:
1. Regional ALS Registry Development
- Establish harmonized registries with common data elements across countries.
- Enable pooled analyses to map incidence, phenotype, and survival trends in Southeast Asia.
2. Genetic and Biomarker Studies
- Investigate the distinctive genetic profile of ALS in Southeast Asian populations, recognizing differences from Western cohorts.
- Connect sites to laboratory and bioinformatics resources to support next-generation sequencing and biomarker discovery.
3. Clinical Trial Readiness
- Strengthen site capabilities for Good Clinical Practice (GCP), ethics, and trial coordination.
- Position Southeast Asian centers as contributors to international ALS trials, ensuring equitable access to emerging therapies.
4. Health Systems and Care Pathways
- Evaluate models of multidisciplinary ALS care suited to resource-limited settings.
- Develop and test culturally adapted care guidelines for implementation across diverse health systems.
Through these priorities, the SEA-ALS Group aims to generate knowledge that is globally relevant while directly improving outcomes for patients and families in Southeast Asia.
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