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

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.

PMID: 41018945
PMCID: PMC12465052
DOI: 10.1016/j.lanwpc.2025.101684

Review

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

Steve Vucic et al. Lancet Reg Health West Pac. 2025.

. 2025 Sep 16:62:101684.

doi: 10.1016/j.lanwpc.2025.101684. eCollection 2025 Sep.

Authors

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.

PMID: 41018945
PMCID: PMC12465052
DOI: 10.1016/j.lanwpc.2025.101684

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.

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Conflict of interest statement

Dr Naoki Atsuta declares receiving grant funding from Japan Agency for Medical Research and Development (Grant number: JP22ek0109538, JP24mk0121294, JP24ak0101216, JP24wm0425009, JP24ek0109631), Grants-in-Aid for Scientific Research (Grant number: 22K07359, 25K10781), consultant fees from Ono Pharma, Mitsubishi Tanabe Pharma Development America, Inc., and Biogen, honorarium for provided lectures by Mitsubishi Tanabe Pharma, Biogen, Eisai, Sumitomo Pharma Honorarium, and Alexion; Professor Gen Sobue reports grant funding from Japan Agency for Medical Research and Development (Grant Number JP24wn0425009h0004, JP24ak0101216h0002 JP24ak0101222h0001), consulting fees from Nippon Boehringer Ingelheim Co., Ltd, KinoPharma, Inc, NIHON PHARMACEUTICAL CO., LTD, personal fees Takumi Information Technology Inc, honorarium from Mitsubishi Tanabe Pharma Corporation, Takeda Pharmaceutical Company Limited, Nippon Chemiphar Co., Ltd, Eisai Co., Ltd, DAIICHI SANKYO, INC, Toray Industries Inc, and National Center for Global health and Medicine, payment for expert testimony from Mitsubishi Tanabe Pharma Corporation and Takeda Pharmaceutical Company Limited; Dr Yi-Chung Lee reports being principal investigator for the ION363-CS1 trial sponsored by IONIS and ALN-SOD-ALS-2351 trial sponsored by REGENERON, honorarium from Biogen Taiwan; Professor Matthew C. Kiernan has provided advice to members of the Therapeutic Goods Administration and the Pharmaceutical Benefits Advisory Committee (Australia) concerning the management of motor neurone disease, edited the Motor Neurone Disease Handbook (2007) published by MJA Books, directed clinical trials as Principal Investigator on behalf of his employers, with funds administered by these affiliated university and hospitals Professor Steve Vucic reports grant funding from National Health and Medical Research Council Australia, Medical Research Future Fund, FightMND, MND research grant (NSW Health), honorarium for advisory board meeting Biogen Australia, co-inventor of medical device/test for diagnosis ALS (MagXcite). Commercialised with international partner Soterix (USA), director in company that holds shares in Clene Inc, being principle investigator on VALOR study (sponsored by Biogen, Australia), RESCUE-ALS study (sponsored by Clene Inc, USA), RESTORE-ALS (sponsored by Clene Inc), ALCAR study (funded by FightMND), TEALS study (funded by FightMND), and ALS-SOD-ALS-2351 trial (Funded by Regeneron, USA). While some authors have received honoraria or research support from industry partners (including Biogen and Mitsubishi Tanabe), and literature span overlapped with these declarations, all recommendations were developed through independent consensus, guided by the available evidence and the collective input of the full author group. Draft recommendations were reviewed collectively to ensure that individual conflicts did not influence guideline content. Where therapies with industry ties were considered (e.g., edaravone), discussions emphasised evidence appraisal and regional service availability. All conflicts of interest were declared and managed in accordance with the GRADE policy guidelines.

Figures

**Fig. 1**
Countries comprising the Pan-Asian Consortium for Treatment and Research in ALS (PACTALS).

**Fig. 2**
Pathways for diagnosis of amyotrophic lateral sclerosis (ALS). The Gold Coast criteria is recommended for diagnosis. Diagnostic categories of past criteria (El-Escorial/Awaji) are no longer necessary to avoid diagnostic delays. If there are uncertainties, it is recommended that investigations that support identifying upper motor neuron (UMN) and lower motor neuron (LMN) dysfunction be undertaken based on availability of these resources in the various PACTALS countries. At the outset, the possibility of mimic disorders should be considered given that most of these are either treatable or have favourable prognosis.

See this image and copyright information in PMC

References

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1. Van Damme P., Al-Chalabi A., Andersen P.M., et al. European Academy of Neurology (EAN) guideline on the management of amyotrophic lateral sclerosis in collaboration with European Reference Network for Neuromuscular Diseases (ERN EURO-NMD) Eur J Neurol. 2024;31(6) - PMC - PubMed
1. Miller R.G., Jackson C.E., Kasarskis E.J., et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the quality standards subcommittee of the American academy of neurology. Neurology. 2009;73(15):1227–1233. - PMC - PubMed
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Pan-Asian consortium for treatment and research in ALS (PACTALS) guidelines for management of amyotrophic lateral sclerosis

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

LinkOut - more resources

Full Text Sources

Miscellaneous