{ "abstract": "Background\n\nAmyotrophic 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\n\nThese 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.", "abstract_shown": true, "affiliations": [ "Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan.", "Department of Physical Rehabilitation, National Center Hospital, National Center of Neurology and Psychiatry, Tokyo, Japan.", "Department of Rehabilitation Medicine, Tohoku University Graduate School of Medicine, Miyagi, Japan.", "Division of Innovation for Medical Information Technology, The Jikei University School of Medicine, Tokyo, Japan.", "Department of Neurology, Nagoya University Graduate School of Medicine, Aichi, Japan.", "Department of Neurology, Tohoku University Graduate School of Medicine, Miyagi, Japan.", "Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan.", "Rehabilitation Center, Jichi Medical University Hospital, Tochigi, Japan.", "Department of Neurology, Aichi Medical University School of Medicine, Aichi, Japan.", "Department of Neuroscience and Pathobiology, Research Institute of Environmental Medicine, Nagoya University, Aichi, Japan.", "Center for Clinical and Translational Research, Kyushu University Hospital, Fukuoka, Japan.", "Department of Neurology, Tokyo Metropolitan Neurological Hospital, Tokyo, Japan.", "Department of Neurology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University, Hokkaido, Japan.", "Institute of Health Science Innovation for Medical Care, Hokkaido University Hospital, Hokkaido University, Hokkaido, Japan.", "Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan.", "iPSC-based Drug discovery and Development Team, RIKEN BioResource Research Center, Kyoto, Japan.", "Unit for Intractable Disease Nursing Care, Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan.", "Department of Neurology, Shiga University of Medical Science, Shiga, Japan.", "Department of Neurology, The University of Osaka Graduate School of Medicine, Osaka, Japan.", "Department of Neurodevelopmental and Neurodegenerative Disease Research, The University of Osaka United Graduate School of Child Development, Osaka, Japan.", "Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan. osamu.kano@med.toho-u.ac.jp." ], "article_type": "research article", "arxiv": null, "author_total": 27, "authors": [ { "affs": [ 0 ], "name": "Takehisa Hirayama" }, { "affs": [ 0 ], "name": "Mari Shibukawa" }, { "affs": [ 0 ], "name": "Harumi Morioka" }, { "affs": [ 0 ], "name": "Makiko Ogawa" }, { "affs": [ 1 ], "name": "Keisuke Yorimoto" }, { "affs": [ 2 ], "name": "Satoru Ebihara" }, { "affs": [ 3 ], "name": "Teppei Sakano" }, { "affs": [ 4 ], "name": "Yohei Iguchi" }, { "affs": [ 4 ], "name": "Masahisa Katsuno" }, { "affs": [ 5 ], "name": "Masashi Aoki" }, { "affs": [ 6 ], "name": "Koji Fujita" }, { "affs": [ 6 ], "name": "Yuishin Izumi" }, { "affs": [ 7 ], "name": "Mitsuya Morita" }, { "affs": [ 8 ], "name": "Ryoichi Nakamura" }, { "affs": [ 8 ], "name": "Naoki Atsuta" }, { "affs": [ 9 ], "name": "Koji Yamanaka" }, { "affs": [ 10 ], "name": "Yuko Kobayakawa" }, { "affs": [ 11 ], "name": "Kota Bokuda" }, { "affs": [ 12 ], "name": "Ikuko Iwata" }, { "affs": [ 13 ], "name": "Ken Sakushima" }, { "affs": [ 14, 15 ], "name": "Keiko Imamura" }, { "affs": [ 0 ], "name": "Hiroshi Tsuda" }, { "affs": [ 16 ], "name": "Yuki Nakayama" }, { "affs": [ 17 ], "name": "Makoto Urushitani" }, { "affs": [ 11 ], "name": "Toshio Shimizu" }, { "affs": [ 18, 19 ], "name": "Seiichi Nagano" }, { "affs": [ 20 ], "name": "Osamu Kano" } ], "bibtex": "https://research.draconitic.com/paper/fh4pkkp7efenw.bib", "cited_by": 0, "doi": "10.1186/s40900-026-01000-5", "fulltext_url": "https://europepmc.org/articles/PMC13723112", "id": "fh4pkkp7efenw", "issns": [ "2056-7529" ], "landing_url": "https://europepmc.org/article/MED/42963796", "language": "eng", "licence": "CC-BY-NC-ND", "licence_label": "CC BY-NC-ND", "licence_source": "article", "licence_url": "https://creativecommons.org/licenses/by-nc-nd/4.0/", "metadata_licence": null, "native_subjects": [ [ "heading", "Research" ], [ "openalex", "3600|Mental Health and Patient Involvement" ] ], "openalex": "W7224815108", "pdf_url": "https://europepmc.org/articles/PMC13723112?pdf=render", "pmcid": "PMC13723112", "pmid": "42963796", "published": "2026-10-30", "publisher": "BMC", "ris": "https://research.draconitic.com/paper/fh4pkkp7efenw.ris", "sources": [ { "first_seen": "2026-11-02T03:21:21Z", "native_id": "MED:42963796", "source": "europepmc", "url": "https://europepmc.org/article/MED/42963796" }, { "first_seen": "2026-11-04T12:21:46Z", "native_id": "PMC13723112", "source": "pmc", "url": "https://doi.org/10.1186/s40900-026-01000-5" } ], "subjects": [], "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.", "title_text": "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.", "type": "peer-reviewed", "updated_at": "2026-11-04T12:21:46Z", "url": "https://research.draconitic.com/paper/fh4pkkp7efenw", "venue": "Research involvement and engagement", "versions": [] }