Patient and public involvement in amyotrophic lateral sclerosis research in Japan: a survey through nationally advertised ALS Café events and a pilot advocacy training program.
21 affiliations
- 1Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan.
- 2Department of Physical Rehabilitation, National Center Hospital, National Center of Neurology and Psychiatry, Tokyo, Japan.
- 3Department of Rehabilitation Medicine, Tohoku University Graduate School of Medicine, Miyagi, Japan.
- 4Division of Innovation for Medical Information Technology, The Jikei University School of Medicine, Tokyo, Japan.
- 5Department of Neurology, Nagoya University Graduate School of Medicine, Aichi, Japan.
- 6Department of Neurology, Tohoku University Graduate School of Medicine, Miyagi, Japan.
- 7Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan.
- 8Rehabilitation Center, Jichi Medical University Hospital, Tochigi, Japan.
- 9Department of Neurology, Aichi Medical University School of Medicine, Aichi, Japan.
- 10Department of Neuroscience and Pathobiology, Research Institute of Environmental Medicine, Nagoya University, Aichi, Japan.
- 11Center for Clinical and Translational Research, Kyushu University Hospital, Fukuoka, Japan.
- 12Department of Neurology, Tokyo Metropolitan Neurological Hospital, Tokyo, Japan.
- 13Department of Neurology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University, Hokkaido, Japan.
- 14Institute of Health Science Innovation for Medical Care, Hokkaido University Hospital, Hokkaido University, Hokkaido, Japan.
- 15Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan.
- 16iPSC-based Drug discovery and Development Team, RIKEN BioResource Research Center, Kyoto, Japan.
- 17Unit for Intractable Disease Nursing Care, Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan.
- 18Department of Neurology, Shiga University of Medical Science, Shiga, Japan.
- 19Department of Neurology, The University of Osaka Graduate School of Medicine, Osaka, Japan.
- 20Department of Neurodevelopmental and Neurodegenerative Disease Research, The University of Osaka United Graduate School of Child Development, Osaka, Japan.
- 21Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan. [email protected].
Abstract
Background
Amyotrophic lateral sclerosis (ALS) remains an incurable, progressive neurodegenerative disease. Patient and public involvement (PPI) has been increasingly recognized as a means to enhance the relevance, quality, and efficiency of research; however, its implementation in intractable neurological disease research remains limited in Japan. This webinar-based study, conducted through nationally advertised ALS Café events, aimed to clarify current PPI awareness among the Japanese ALS community and to explore strategies for promoting patient advocacy. Data were collected during the "ALS Café" held in September 2024 and a subsequent patient advocacy training program organized in October 2025. Among 79 respondents (42 patients with ALS and 37 caregivers), approximately 80% reported being unfamiliar with the concept of PPI, yet 72.2% expressed willingness to participate once the concept was explained. Among the 57 respondents willing to participate, interest was highest for involvement in translating research findings into practice (56.1%) and in identifying research themes (47.4%), and most (93%) stated that they expected no remuneration beyond reimbursement of expenses. The subsequent training program was well received, with mean evaluation scores exceeding 8.0 on a 0-10 scale, indicating high comprehensibility among participants (changes in knowledge or willingness to participate were not assessed). Respondents were a self-selected group of ALS Café participants with limited demographic characterization who may not represent patients and caregivers who do not participate in such events, and the training program evaluation lacked a pre-training baseline; these limitations should be considered when interpreting our findings.Conclusions
These findings reveal substantial stated willingness among Japanese patients with ALS and their caregivers to contribute to research despite low baseline awareness of PPI. This gap between limited awareness and high stated willingness suggests that targeted educational efforts could meaningfully expand patient engagement in ALS research. Systematic awareness-building initiatives, structured and accessible engagement opportunities, and sustained collaborative relationships between researchers and the patient community are essential for strengthening patient advocacy and accelerating drug development for ALS in Japan.
Related
- Beyond Motor Neuron Degeneration: Non-Motor Manifestations and Multisystem Involvement in Amyotrophic Lateral Sclerosis
- Transcutaneous Carbon Dioxide Monitoring in Amyotrophic Lateral Sclerosis: A Scoping Review
- The value of a family history to distinguish monogenic from polygenic amyotrophic lateral sclerosis
- OGT regulates RNA-binding protein nucleocytoplasmic partitioning, but this fails in amyotrophic lateral sclerosis
- Amyotrophic Lateral Sclerosis in a Patient Treated for Neurosyphilis: A Case Report
BibTeX
@article{hirayama2026patient,
title = {{Patient and public involvement in amyotrophic lateral sclerosis research in Japan: a survey through nationally advertised ALS Café events and a pilot advocacy training program.}},
author = {Takehisa Hirayama and Mari Shibukawa and Harumi Morioka and Makiko Ogawa and Keisuke Yorimoto and Satoru Ebihara and Teppei Sakano and Yohei Iguchi and Masahisa Katsuno and Masashi Aoki and Koji Fujita and Yuishin Izumi and Mitsuya Morita and Ryoichi Nakamura and Naoki Atsuta and Koji Yamanaka and Yuko Kobayakawa and Kota Bokuda and Ikuko Iwata and Ken Sakushima and Keiko Imamura and Hiroshi Tsuda and Yuki Nakayama and Makoto Urushitani and Toshio Shimizu and Seiichi Nagano and Osamu Kano},
journal = {Research involvement and engagement},
year = {2026},
month = oct,
doi = {10.1186/s40900-026-01000-5},
url = {https://europepmc.org/article/MED/42963796},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Patient and public involvement in amyotrophic lateral sclerosis research in Japan: a survey through nationally advertised ALS Café events and a pilot advocacy training program.
AU - Takehisa Hirayama
AU - Mari Shibukawa
AU - Harumi Morioka
AU - Makiko Ogawa
AU - Keisuke Yorimoto
AU - Satoru Ebihara
AU - Teppei Sakano
AU - Yohei Iguchi
AU - Masahisa Katsuno
AU - Masashi Aoki
AU - Koji Fujita
AU - Yuishin Izumi
AU - Mitsuya Morita
AU - Ryoichi Nakamura
AU - Naoki Atsuta
AU - Koji Yamanaka
AU - Yuko Kobayakawa
AU - Kota Bokuda
AU - Ikuko Iwata
AU - Ken Sakushima
AU - Keiko Imamura
AU - Hiroshi Tsuda
AU - Yuki Nakayama
AU - Makoto Urushitani
AU - Toshio Shimizu
AU - Seiichi Nagano
AU - Osamu Kano
PY - 2026
DA - 2026/10/30
JO - Research involvement and engagement
DO - 10.1186/s40900-026-01000-5
UR - https://europepmc.org/article/MED/42963796
AB - Background Amyotrophic lateral sclerosis (ALS) remains an incurable, progressive neurodegenerative disease. Patient and public involvement (PPI) has been increasingly recognized as a means to enhance the relevance, quality, and efficiency of research; however, its implementation in intractable neurological disease research remains limited in Japan. This webinar-based study, conducted through nationally advertised ALS Café events, aimed to clarify current PPI awareness among the Japanese ALS community and to explore strategies for promoting patient advocacy. Data were collected during the "ALS Café" held in September 2024 and a subsequent patient advocacy training program organized in October 2025. Among 79 respondents (42 patients with ALS and 37 caregivers), approximately 80% reported being unfamiliar with the concept of PPI, yet 72.2% expressed willingness to participate once the concept was explained. Among the 57 respondents willing to participate, interest was highest for involvement in translating research findings into practice (56.1%) and in identifying research themes (47.4%), and most (93%) stated that they expected no remuneration beyond reimbursement of expenses. The subsequent training program was well received, with mean evaluation scores exceeding 8.0 on a 0-10 scale, indicating high comprehensibility among participants (changes in knowledge or willingness to participate were not assessed). Respondents were a self-selected group of ALS Café participants with limited demographic characterization who may not represent patients and caregivers who do not participate in such events, and the training program evaluation lacked a pre-training baseline; these limitations should be considered when interpreting our findings.Conclusions These findings reveal substantial stated willingness among Japanese patients with ALS and their caregivers to contribute to research despite low baseline awareness of PPI. This gap between limited awareness and high stated willingness suggests that targeted educational efforts could meaningfully expand patient engagement in ALS research. Systematic awareness-building initiatives, structured and accessible engagement opportunities, and sustained collaborative relationships between researchers and the patient community are essential for strengthening patient advocacy and accelerating drug development for ALS in Japan.
SN - 2056-7529
ER -