Wai Yee Fung, Sheila Agustini, Jakkrit Amornvit, Josiah Chai, Ludwig F Damian, Nurul Fadli, Dk Hjh Norazieda Pg Hj Mohd Yassin, Southanalinh Keovilayhong, Dhayalen Krishnan, Kongkiat Kulkantrakorn, Minh Duc Nguyen Tran, Kay Ng, Hoang T T Nghia, Ohnmar Ohnmar, Dayangku Siti Nur Ashikin Pengiran Tengah, Mario Prado, Rabani Remli, Arada Rojana-Udomsart, Tu Quoc Le Tuan, Ahmad Yanuar, Nortina Shahrizaila
{"title":"Strengthening care and research in ALS in Southeast Asia: a call for action.","authors":"Wai Yee Fung, Sheila Agustini, Jakkrit Amornvit, Josiah Chai, Ludwig F Damian, Nurul Fadli, Dk Hjh Norazieda Pg Hj Mohd Yassin, Southanalinh Keovilayhong, Dhayalen Krishnan, Kongkiat Kulkantrakorn, Minh Duc Nguyen Tran, Kay Ng, Hoang T T Nghia, Ohnmar Ohnmar, Dayangku Siti Nur Ashikin Pengiran Tengah, Mario Prado, Rabani Remli, Arada Rojana-Udomsart, Tu Quoc Le Tuan, Ahmad Yanuar, Nortina Shahrizaila","doi":"10.1080/21678421.2026.2671159","DOIUrl":null,"url":null,"abstract":"<p><p>In Southeast Asia (SEA), healthcare resources, infrastructure, and access to therapies in amyotrophic lateral sclerosis (ALS) remain limited compared to other parts of the Asia-Pacific region. Many SEA countries continue to face delays in diagnosis, fragmented care pathways, and limited representation in international research. Beyond health system challenges, ALS in SEA may also differ biologically. Emerging studies suggest that genetic variants and clinical phenotypes in Asian populations are not fully mirrored in Western cohorts. In this report, the authors summarize their country-specific background and status of care in ALS as well as their consensus on future strategies and actions. Key short- and long-term strategies are proposed, highlighting the critical need for regional collaboration and patient engagement to advance ALS care and research in the region.</p>","PeriodicalId":72184,"journal":{"name":"Amyotrophic lateral sclerosis & frontotemporal degeneration","volume":" ","pages":"723-728"},"PeriodicalIF":2.8000,"publicationDate":"2026-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Amyotrophic lateral sclerosis & frontotemporal degeneration","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1080/21678421.2026.2671159","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2026/5/21 0:00:00","PubModel":"Epub","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
Abstract
In Southeast Asia (SEA), healthcare resources, infrastructure, and access to therapies in amyotrophic lateral sclerosis (ALS) remain limited compared to other parts of the Asia-Pacific region. Many SEA countries continue to face delays in diagnosis, fragmented care pathways, and limited representation in international research. Beyond health system challenges, ALS in SEA may also differ biologically. Emerging studies suggest that genetic variants and clinical phenotypes in Asian populations are not fully mirrored in Western cohorts. In this report, the authors summarize their country-specific background and status of care in ALS as well as their consensus on future strategies and actions. Key short- and long-term strategies are proposed, highlighting the critical need for regional collaboration and patient engagement to advance ALS care and research in the region.