Pan-Asian consortium for treatment and research in ALS (PACTALS) guidelines for management of amyotrophic lateral sclerosis

Steve Vucic; Nortina Shahrizaila; Osamu Kano; Parvathi Menon; Sheila Agustini; Kongkiat Kulkantrakorn; Nalini Atchayaram; Yi-Chung Lee; Mario B Prado Jr; Kay W P Ng; Josiah Chai; Bugyeong Son; Paul Talman; Hoang Tien Trong Nghia; Le Tu Quoc Tuan; Kazumoto Shibuya; Yuishin Izumi; Naoki Atsuta; Robert D Henderson; Liying Cui; Mingsheng Liu; Ohnmar Ohnmar; Remli Rabani; Yoon-Ho Hong; Jung-Joon Sung; Dongsheng Fan; Veena Raykar; Satoshi Kuwabara; Seung Hyun Kim; Gen Sobue; Matthew C Kiernan

doi:10.1016/j.lanwpc.2025.101684

Pan-Asian consortium for treatment and research in ALS (PACTALS) guidelines for management of amyotrophic lateral sclerosis

Lancet Reg Health West Pac. 2025 Sep 16:62:101684. doi: 10.1016/j.lanwpc.2025.101684. eCollection 2025 Sep.

Authors

Steve Vucic¹, Nortina Shahrizaila², Osamu Kano³, Parvathi Menon¹, Sheila Agustini⁴, Kongkiat Kulkantrakorn⁵, Nalini Atchayaram⁶, Yi-Chung Lee⁷, Mario B Prado Jr⁸, Kay W P Ng^{9

10}, Josiah Chai¹¹, Bugyeong Son^{12

13}, Paul Talman¹⁴, Hoang Tien Trong Nghia¹⁵, Le Tu Quoc Tuan¹⁶, Kazumoto Shibuya¹⁷, Yuishin Izumi¹⁸, Naoki Atsuta¹⁹, Robert D Henderson²⁰, Liying Cui²¹, Mingsheng Liu²¹, Ohnmar Ohnmar²², Remli Rabani²³, Yoon-Ho Hong²⁴, Jung-Joon Sung²⁵, Dongsheng Fan²⁶, Veena Raykar²⁷, Satoshi Kuwabara¹⁷, Seung Hyun Kim²⁸, Gen Sobue²⁹, Matthew C Kiernan^{30

31}

Affiliations

¹ Brain and Nerve Research Centre, The University of Sydney, Sydney, Australia.
² Department of Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
³ Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan.
⁴ Department of Neurology, Mayapada Hospital, South Jakarta, Indonesia.
⁵ Neurology Division, Department of Internal Medicine, Faculty of Medicine, Thammasat University, Pathumtani, Thailand.
⁶ Department of Neurology, Neuroscience Faculty Center, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, India.
⁷ Department of Neurology, Taipei Veterans General Hospital, School of Medicine National Yang Ming Chao Tung University, Taipei, Taiwan.
⁸ Department of Physiology, University of the Philippines- College of Medicine, Manila, Philippines.
⁹ Division of Neurology, Department of Medicine, National University Hospital, Singapore.
¹⁰ Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
¹¹ Department of Neurology, National Neuroscience Institute (TTSH Campus), Singapore, Singapore.
¹² Cell Therapy Centre, Department of Neurology, Hanyang University Seoul Hospital, Seoul, Republic of Korea.
¹³ Department of Public Health Sciences, Hanyang University Graduate School, Seoul, Republic of Korea.
¹⁴ Deakin University, University Hospital Geelong, Geelong, Victoria, Australia.
¹⁵ Department of Neurology, Military Hospital 175, Vietnam.
¹⁶ Department of Neurology, Trieu an Hospital, Vietnam.
¹⁷ Department of Neurology, Graduate School of Medicine, Chiba University, Chiba, Japan.
¹⁸ Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Japan.
¹⁹ Department of Neurology, Aichi Medical University School of Medicine, Nagakute, Japan.
²⁰ Department of Neurology, Royal Brisbane and Women's Hospital, Centre for Clinical Research, The University of Queensland, Brisbane, Australia.
²¹ Department of Neurology, Peking Union Medical College Hospital, Beijing, China.
²² Department of Neurology, Yangon General Hospital/University of Medicine 1, Myanmar.
²³ Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.
²⁴ Department of Neurology, Seoul National University, College of Medicine; Seoul Metropolitan Government Boramae Medical Center, Republic of Korea.
²⁵ Department of Neurology, Seoul National University College of Medicine, Seoul National University Hospital, Republic of Korea.
²⁶ Department of Neurology, Peking University Third Hospital, Beijing, 100191, China.
²⁷ Concord Repatriation General Hospital, Sydney, Australia.
²⁸ Department of Neurology, College of Medicine, Hanyang University, Seoul, Republic of Korea.
²⁹ Aichi Medical University, Nagakute, Aichi, Japan.
³⁰ Neuroscience Research Australia, University of New South Wales, Margarete Ainsworth Building, Barker Street Randwick, Sydney, NSW, Australia.
³¹ University of New South Wales, Australia.

Abstract

The Pan-Asian Consortium for Treatment and Research in ALS (PACTALS) guidelines were developed for the management of amyotrophic lateral sclerosis (ALS) patients living in the Asia-Pacific countries, taking into consideration the ethnic, racial and economic diversity of the region. The majority of patients reside in low-income (limited-resource setting) and middle-income countries. Grading of Recommendations Assessment, Development, and Evaluation (GRADE) methodology was utilised for development of the PACTALS management guidelines. Nine broad research questions, divided into sections, were addressed. Evidence was derived from existing Cochrane reviews, systematic reviews, meta-analysis, and randomized controlled trials (RCT) along with consensus when evidence was limited. Recommendations were provided for diagnostic pathways, use of disease modifying therapies, appropriateness of multidisciplinary care models, management of respiratory dysfunction, communication and nutrition, addressing symptoms that affect the quality of life, managing cognitive, behavioural and emotional symptoms as well as appropriate implementation of palliative care services and addressing end-of-life issues. The PACTALS guidelines provide a much-needed framework for the management of ALS patients living in the Asia-Pacific region. The management guidelines will be updated as the treatment landscape evolves and evidence of novel management approaches becomes available.

Keywords: ALS; GRADE; MND; PICO.

Publication types

Review