{"id":"https://openalex.org/W7224815108","doi":"https://doi.org/10.1186/s40900-026-01000-5","title":"Patient and public involvement in amyotrophic lateral sclerosis research in Japan: a survey through nationally advertised ALS Caf\u00e9 events and a pilot advocacy training program","display_name":"Patient and public involvement in amyotrophic lateral sclerosis research in Japan: a survey through nationally advertised ALS Caf\u00e9 events and a pilot advocacy training program","publication_year":2026,"publication_date":"2026-10-30","ids":{"openalex":"https://openalex.org/W7224815108","doi":"https://doi.org/10.1186/s40900-026-01000-5","pmid":"https://pubmed.ncbi.nlm.nih.gov/42963796","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/13723112"},"language":"en","primary_location":{"id":"doi:10.1186/s40900-026-01000-5","doi":"https://doi.org/10.1186/s40900-026-01000-5","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s40900-026-01000-5","pdf_url":"https://link.springer.com/content/pdf/10.1186/s40900-026-01000-5.pdf","source":{"id":"https://openalex.org/S2739225236","display_name":"Research Involvement and Engagement","issn_l":"2056-7529","issn":["2056-7529"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","jufo-1","ki-jl-1","norway-1","poland-20","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Research Involvement and Engagement","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://link.springer.com/content/pdf/10.1186/s40900-026-01000-5.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5160226391","display_name":"Takehisa Hirayama","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I129634264","display_name":"Toho University","ror":"https://ror.org/02hcx7n63","country_code":"JP","type":"education","lineage":["https://openalex.org/I129634264"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Takehisa Hirayama","raw_affiliation_strings":["Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan","institution_ids":["https://openalex.org/I129634264"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5052044299","display_name":"Mari Shibukawa","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I129634264","display_name":"Toho University","ror":"https://ror.org/02hcx7n63","country_code":"JP","type":"education","lineage":["https://openalex.org/I129634264"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Mari Shibukawa","raw_affiliation_strings":["Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan","institution_ids":["https://openalex.org/I129634264"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5082027045","display_name":"Harumi Morioka","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I129634264","display_name":"Toho University","ror":"https://ror.org/02hcx7n63","country_code":"JP","type":"education","lineage":["https://openalex.org/I129634264"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Harumi Morioka","raw_affiliation_strings":["Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan","institution_ids":["https://openalex.org/I129634264"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160191800","display_name":"Makiko Ogawa","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I129634264","display_name":"Toho University","ror":"https://ror.org/02hcx7n63","country_code":"JP","type":"education","lineage":["https://openalex.org/I129634264"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Makiko Ogawa","raw_affiliation_strings":["Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan","institution_ids":["https://openalex.org/I129634264"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5066073033","display_name":"Keisuke Yorimoto","orcid":"https://orcid.org/0000-0002-8442-821X","observed_orcids":["https://orcid.org/0000-0002-8442-821X"]},"institutions":[{"id":"https://openalex.org/I4210103779","display_name":"National Center of Neurology and Psychiatry","ror":"https://ror.org/0254bmq54","country_code":"JP","type":"healthcare","lineage":["https://openalex.org/I4210103779"]},{"id":"https://openalex.org/I4405284741","display_name":"National Center Hospital of Neurology and Psychiatry","ror":"https://ror.org/044ryqe56","country_code":"JP","type":"healthcare","lineage":["https://openalex.org/I4210103779","https://openalex.org/I4405284741"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Keisuke Yorimoto","raw_affiliation_strings":["Department of Physical Rehabilitation, National Center Hospital, National Center of Neurology and Psychiatry, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Physical Rehabilitation, National Center Hospital, National Center of Neurology and Psychiatry, Tokyo, Japan","institution_ids":["https://openalex.org/I4210103779","https://openalex.org/I4405284741"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5136447322","display_name":"Satoru Ebihara","orcid":"https://orcid.org/0000-0002-3574-649X","observed_orcids":["https://orcid.org/0000-0002-3574-649X"]},"institutions":[{"id":"https://openalex.org/I201537933","display_name":"Tohoku University","ror":"https://ror.org/01dq60k83","country_code":"JP","type":"education","lineage":["https://openalex.org/I201537933"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Satoru Ebihara","raw_affiliation_strings":["Department of Rehabilitation Medicine, Tohoku University Graduate School of Medicine, Miyagi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Rehabilitation Medicine, Tohoku University Graduate School of Medicine, Miyagi, Japan","institution_ids":["https://openalex.org/I201537933"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5039302870","display_name":"Teppei Sakano","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I115498069","display_name":"Jikei University School of Medicine","ror":"https://ror.org/039ygjf22","country_code":"JP","type":"education","lineage":["https://openalex.org/I115498069"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Teppei Sakano","raw_affiliation_strings":["Division of Innovation for Medical Information Technology, The Jikei University School of Medicine, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Innovation for Medical Information Technology, The Jikei University School of Medicine, Tokyo, Japan","institution_ids":["https://openalex.org/I115498069"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160225963","display_name":"Yohei Iguchi","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I60134161","display_name":"Nagoya University","ror":"https://ror.org/04chrp450","country_code":"JP","type":"education","lineage":["https://openalex.org/I60134161"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Yohei Iguchi","raw_affiliation_strings":["Department of Neurology, Nagoya University Graduate School of Medicine, Aichi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Nagoya University Graduate School of Medicine, Aichi, Japan","institution_ids":["https://openalex.org/I60134161"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160164144","display_name":"Masahisa Katsuno","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I60134161","display_name":"Nagoya University","ror":"https://ror.org/04chrp450","country_code":"JP","type":"education","lineage":["https://openalex.org/I60134161"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Masahisa Katsuno","raw_affiliation_strings":["Department of Neurology, Nagoya University Graduate School of Medicine, Aichi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Nagoya University Graduate School of Medicine, Aichi, Japan","institution_ids":["https://openalex.org/I60134161"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160231210","display_name":"Masashi Aoki","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I201537933","display_name":"Tohoku University","ror":"https://ror.org/01dq60k83","country_code":"JP","type":"education","lineage":["https://openalex.org/I201537933"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Masashi Aoki","raw_affiliation_strings":["Department of Neurology, Tohoku University Graduate School of Medicine, Miyagi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Tohoku University Graduate School of Medicine, Miyagi, Japan","institution_ids":["https://openalex.org/I201537933"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160179754","display_name":"Koji Fujita","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I922474255","display_name":"Tokushima University","ror":"https://ror.org/044vy1d05","country_code":"JP","type":"education","lineage":["https://openalex.org/I922474255"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Koji Fujita","raw_affiliation_strings":["Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan","institution_ids":["https://openalex.org/I922474255"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160190925","display_name":"Yuishin Izumi","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I922474255","display_name":"Tokushima University","ror":"https://ror.org/044vy1d05","country_code":"JP","type":"education","lineage":["https://openalex.org/I922474255"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Yuishin Izumi","raw_affiliation_strings":["Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan","institution_ids":["https://openalex.org/I922474255"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160163316","display_name":"Mitsuya Morita","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210153031","display_name":"Jichi Medical University Hospital","ror":"https://ror.org/04at0zw32","country_code":"JP","type":"healthcare","lineage":["https://openalex.org/I4210153031"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Mitsuya Morita","raw_affiliation_strings":["Rehabilitation Center, Jichi Medical University Hospital, Tochigi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Rehabilitation Center, Jichi Medical University Hospital, Tochigi, Japan","institution_ids":["https://openalex.org/I4210153031"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160163220","display_name":"Ryoichi Nakamura","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I16528096","display_name":"Aichi Medical University","ror":"https://ror.org/02h6cs343","country_code":"JP","type":"education","lineage":["https://openalex.org/I16528096"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Ryoichi Nakamura","raw_affiliation_strings":["Department of Neurology, Aichi Medical University School of Medicine, Aichi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Aichi Medical University School of Medicine, Aichi, Japan","institution_ids":["https://openalex.org/I16528096"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160162199","display_name":"Naoki Atsuta","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I16528096","display_name":"Aichi Medical University","ror":"https://ror.org/02h6cs343","country_code":"JP","type":"education","lineage":["https://openalex.org/I16528096"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Naoki Atsuta","raw_affiliation_strings":["Department of Neurology, Aichi Medical University School of Medicine, Aichi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Aichi Medical University School of Medicine, Aichi, Japan","institution_ids":["https://openalex.org/I16528096"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160203530","display_name":"Koji Yamanaka","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4405286286","display_name":"Research Institute of Environmental Medicine, Nagoya University","ror":"https://ror.org/01qvr7m20","country_code":"JP","type":"facility","lineage":["https://openalex.org/I4405286286","https://openalex.org/I60134161"]},{"id":"https://openalex.org/I60134161","display_name":"Nagoya University","ror":"https://ror.org/04chrp450","country_code":"JP","type":"education","lineage":["https://openalex.org/I60134161"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Koji Yamanaka","raw_affiliation_strings":["Department of Neuroscience and Pathobiology, Research Institute of Environmental Medicine, Nagoya University, Aichi, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neuroscience and Pathobiology, Research Institute of Environmental Medicine, Nagoya University, Aichi, Japan","institution_ids":["https://openalex.org/I4405286286","https://openalex.org/I60134161"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5048417773","display_name":"Yuko Kobayakawa","orcid":"https://orcid.org/0000-0002-6823-8205","observed_orcids":["https://orcid.org/0000-0002-6823-8205"]},"institutions":[{"id":"https://openalex.org/I135598925","display_name":"Kyushu University","ror":"https://ror.org/00p4k0j84","country_code":"JP","type":"education","lineage":["https://openalex.org/I135598925"]},{"id":"https://openalex.org/I4210097767","display_name":"Kyushu University Hospital","ror":"https://ror.org/00ex2fc97","country_code":"JP","type":"healthcare","lineage":["https://openalex.org/I135598925","https://openalex.org/I4210097767"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Yuko Kobayakawa","raw_affiliation_strings":["Center for Clinical and Translational Research, Kyushu University Hospital, Fukuoka, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for Clinical and Translational Research, Kyushu University Hospital, Fukuoka, Japan","institution_ids":["https://openalex.org/I135598925","https://openalex.org/I4210097767"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5083454157","display_name":"Kota Bokuda","orcid":"https://orcid.org/0000-0002-8577-6654","observed_orcids":["https://orcid.org/0000-0002-8577-6654","https://orcid.org/0000-0003-1869-0364"]},"institutions":[{"id":"https://openalex.org/I4210123749","display_name":"Tokyo Metropolitan Neurological Hospital","ror":"https://ror.org/02j1xhm46","country_code":"JP","type":"healthcare","lineage":["https://openalex.org/I4210123749"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Kota Bokuda","raw_affiliation_strings":["Department of Neurology, Tokyo Metropolitan Neurological Hospital, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Tokyo Metropolitan Neurological Hospital, Tokyo, Japan","institution_ids":["https://openalex.org/I4210123749"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5076659910","display_name":"\u5ca9\u7530\u80b2\u5b50","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I205349734","display_name":"Hokkaido University","ror":"https://ror.org/02e16g702","country_code":"JP","type":"education","lineage":["https://openalex.org/I205349734"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Ikuko Iwata","raw_affiliation_strings":["Department of Neurology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University, Hokkaido, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University, Hokkaido, Japan","institution_ids":["https://openalex.org/I205349734"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160209375","display_name":"Ken Sakushima","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I205349734","display_name":"Hokkaido University","ror":"https://ror.org/02e16g702","country_code":"JP","type":"education","lineage":["https://openalex.org/I205349734"]},{"id":"https://openalex.org/I4210141669","display_name":"Hokkaido University Hospital","ror":"https://ror.org/0419drx70","country_code":"JP","type":"healthcare","lineage":["https://openalex.org/I4210141669"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Ken Sakushima","raw_affiliation_strings":["Institute of Health Science Innovation for Medical Care, Hokkaido University Hospital, Hokkaido University, Hokkaido, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Institute of Health Science Innovation for Medical Care, Hokkaido University Hospital, Hokkaido University, Hokkaido, Japan","institution_ids":["https://openalex.org/I205349734","https://openalex.org/I4210141669"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160215645","display_name":"Keiko Imamura","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I22299242","display_name":"Kyoto University","ror":"https://ror.org/02kpeqv85","country_code":"JP","type":"education","lineage":["https://openalex.org/I22299242"]},{"id":"https://openalex.org/I4210096362","display_name":"RIKEN BioResource Research Center","ror":"https://ror.org/00s05em53","country_code":"JP","type":"facility","lineage":["https://openalex.org/I4210096362","https://openalex.org/I4210110652"]},{"id":"https://openalex.org/I4405264757","display_name":"Center for iPS Cell Research and Application, Kyoto University","ror":"https://ror.org/02wja3x38","country_code":"JP","type":"education","lineage":["https://openalex.org/I22299242","https://openalex.org/I4405264757"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Keiko Imamura","raw_affiliation_strings":["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"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan","institution_ids":["https://openalex.org/I22299242","https://openalex.org/I4405264757"]},{"raw_affiliation_string":"iPSC-based Drug discovery and Development Team, RIKEN BioResource Research Center, Kyoto, Japan","institution_ids":["https://openalex.org/I4210096362"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160167897","display_name":"Hiroshi Tsuda","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I129634264","display_name":"Toho University","ror":"https://ror.org/02hcx7n63","country_code":"JP","type":"education","lineage":["https://openalex.org/I129634264"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Hiroshi Tsuda","raw_affiliation_strings":["Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan","institution_ids":["https://openalex.org/I129634264"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5055779811","display_name":"Yuki Nakayama","orcid":"https://orcid.org/0000-0001-8620-612X","observed_orcids":["https://orcid.org/0000-0001-8620-612X"]},"institutions":[{"id":"https://openalex.org/I4210098918","display_name":"Tokyo Metropolitan Institute of Medical Science","ror":"https://ror.org/00vya8493","country_code":"JP","type":"facility","lineage":["https://openalex.org/I4210098918"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Yuki Nakayama","raw_affiliation_strings":["Unit for Intractable Disease Nursing Care, Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Unit for Intractable Disease Nursing Care, Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan","institution_ids":["https://openalex.org/I4210098918"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5069055172","display_name":"Makoto Urushitani","orcid":"https://orcid.org/0000-0003-2773-9836","observed_orcids":["https://orcid.org/0000-0003-2773-9836"]},"institutions":[{"id":"https://openalex.org/I160046202","display_name":"Shiga University of Medical Science","ror":"https://ror.org/00d8gp927","country_code":"JP","type":"education","lineage":["https://openalex.org/I160046202"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Makoto Urushitani","raw_affiliation_strings":["Department of Neurology, Shiga University of Medical Science, Shiga, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Shiga University of Medical Science, Shiga, Japan","institution_ids":["https://openalex.org/I160046202"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5160171575","display_name":"Toshio Shimizu","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210123749","display_name":"Tokyo Metropolitan Neurological Hospital","ror":"https://ror.org/02j1xhm46","country_code":"JP","type":"healthcare","lineage":["https://openalex.org/I4210123749"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Toshio Shimizu","raw_affiliation_strings":["Department of Neurology, Tokyo Metropolitan Neurological Hospital, Tokyo, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Tokyo Metropolitan Neurological Hospital, Tokyo, Japan","institution_ids":["https://openalex.org/I4210123749"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5063560154","display_name":"Seiichi Nagano","orcid":"https://orcid.org/0000-0002-0826-177X","observed_orcids":["https://orcid.org/0000-0002-0826-177X"]},"institutions":[{"id":"https://openalex.org/I98285908","display_name":"The University of Osaka","ror":"https://ror.org/035t8zc32","country_code":"JP","type":"education","lineage":["https://openalex.org/I98285908"]}],"countries":["JP"],"is_corresponding":false,"raw_author_name":"Seiichi Nagano","raw_affiliation_strings":["Department of Neurodevelopmental and Neurodegenerative Disease Research, The University of Osaka United Graduate School of Child Development, Osaka, Japan","Department of Neurology, The University of Osaka Graduate School of Medicine, Osaka, Japan"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurodevelopmental and Neurodegenerative Disease Research, The University of Osaka United Graduate School of Child Development, Osaka, Japan","institution_ids":["https://openalex.org/I98285908"]},{"raw_affiliation_string":"Department of Neurology, The University of Osaka Graduate School of Medicine, Osaka, Japan","institution_ids":["https://openalex.org/I98285908"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5160166123","display_name":"Osamu Kano","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I129634264","display_name":"Toho University","ror":"https://ror.org/02hcx7n63","country_code":"JP","type":"education","lineage":["https://openalex.org/I129634264"]}],"countries":["JP"],"is_corresponding":true,"raw_author_name":"Osamu Kano","raw_affiliation_strings":["Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan. osamu.kano@med.toho-u.ac.jp"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan. osamu.kano@med.toho-u.ac.jp","institution_ids":["https://openalex.org/I129634264"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":21,"corresponding_author_ids":["https://openalex.org/A5160166123"],"corresponding_institution_ids":["https://openalex.org/I129634264"],"apc_list":{"value":2590,"currency":"USD","value_usd":2590},"apc_paid":{"value":2590,"currency":"USD","value_usd":2590},"fwci":0.0,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":{"value":0.86198174,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"12","issue":"1","first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11639","display_name":"Mental Health and Patient Involvement","score":0.9955999851226807,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11639","display_name":"Mental Health and Patient Involvement","score":0.9955999851226807,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10855","display_name":"Amyotrophic Lateral Sclerosis Research","score":0.00139999995008111,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T12196","display_name":"Community Health and Development","score":0.00039999998989515007,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/amyotrophic-lateral-sclerosis","display_name":"amyotrophic lateral sclerosis","score":0.9629999995231628},{"id":"https://openalex.org/keywords/patient-and-public-involvement","display_name":"patient and public involvement","score":0.9860000014305115},{"id":"https://openalex.org/keywords/advocacy-training","display_name":"advocacy training","score":0.6779999732971191},{"id":"https://openalex.org/keywords/patient-advocacy","display_name":"patient advocacy","score":0.7670000195503235},{"id":"https://openalex.org/keywords/research-engagement","display_name":"research engagement","score":0.5640000104904175}],"concepts":[{"id":"https://openalex.org/C2991699479","wikidata":"https://www.wikidata.org/wiki/Q541936","display_name":"Public involvement","level":2,"score":0.7937999963760376},{"id":"https://openalex.org/C2780596555","wikidata":"https://www.wikidata.org/wiki/Q206901","display_name":"Amyotrophic lateral sclerosis","level":3,"score":0.7756999731063843},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.6653000116348267},{"id":"https://openalex.org/C2777471088","wikidata":"https://www.wikidata.org/wiki/Q7144984","display_name":"Patient advocacy","level":3,"score":0.444599986076355},{"id":"https://openalex.org/C2992702578","wikidata":"https://www.wikidata.org/wiki/Q1203526","display_name":"Pilot program","level":2,"score":0.43470001220703125},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.4083999991416931},{"id":"https://openalex.org/C2776511598","wikidata":"https://www.wikidata.org/wiki/Q7144993","display_name":"Patient participation","level":3,"score":0.3614000082015991},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.3228999972343445},{"id":"https://openalex.org/C2777211547","wikidata":"https://www.wikidata.org/wiki/Q17141490","display_name":"Training (meteorology)","level":2,"score":0.3190000057220459},{"id":"https://openalex.org/C2987226825","wikidata":"https://www.wikidata.org/wiki/Q541936","display_name":"Community participation","level":2,"score":0.31709998846054077},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.3154999911785126},{"id":"https://openalex.org/C2778466831","wikidata":"https://www.wikidata.org/wiki/Q206901","display_name":"Motor neurone disease","level":4,"score":0.31349998712539673},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.3068999946117401},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.305400013923645},{"id":"https://openalex.org/C99508421","wikidata":"https://www.wikidata.org/wiki/Q2678675","display_name":"Physical medicine and rehabilitation","level":1,"score":0.29339998960494995},{"id":"https://openalex.org/C173481278","wikidata":"https://www.wikidata.org/wiki/Q7257997","display_name":"Survey research","level":2,"score":0.2921999990940094},{"id":"https://openalex.org/C133462117","wikidata":"https://www.wikidata.org/wiki/Q4929239","display_name":"Data collection","level":2,"score":0.2827000021934509},{"id":"https://openalex.org/C5395021","wikidata":"https://www.wikidata.org/wiki/Q1061410","display_name":"Program evaluation","level":2,"score":0.257099986076355},{"id":"https://openalex.org/C134698397","wikidata":"https://www.wikidata.org/wiki/Q17946","display_name":"Public opinion","level":3,"score":0.2547999918460846},{"id":"https://openalex.org/C102190203","wikidata":"https://www.wikidata.org/wiki/Q380141","display_name":"Occupational therapy","level":2,"score":0.25429999828338623},{"id":"https://openalex.org/C2778818304","wikidata":"https://www.wikidata.org/wiki/Q1819478","display_name":"Rehabilitation","level":2,"score":0.2515000104904175}],"mesh":[],"locations_count":4,"locations":[{"id":"doi:10.1186/s40900-026-01000-5","doi":"https://doi.org/10.1186/s40900-026-01000-5","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s40900-026-01000-5","pdf_url":"https://link.springer.com/content/pdf/10.1186/s40900-026-01000-5.pdf","source":{"id":"https://openalex.org/S2739225236","display_name":"Research Involvement and Engagement","issn_l":"2056-7529","issn":["2056-7529"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","jufo-1","ki-jl-1","norway-1","poland-20","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Research Involvement and Engagement","raw_type":"journal-article"},{"id":"pmh:oai:pubmedcentral.nih.gov:13723112","doi":null,"is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC13723112/","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC13723112/pdf/40900_2026_Article_1000.pdf","source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Res Involv Engagem","raw_type":"Text"},{"id":"pmid:42963796","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/42963796","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Research involvement and engagement","raw_type":"Journal Article"},{"id":"pmh:oai:doaj.org/article:e3f30772b59543f9a72aa2548720127b","doi":null,"is_oa":false,"landing_page_url":"https://doaj.org/article/e3f30772b59543f9a72aa2548720127b","pdf_url":null,"source":{"id":"https://openalex.org/S4306401280","display_name":"DOAJ (DOAJ: Directory of Open Access Journals)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Research Involvement and Engagement, Vol 12, Iss 1 (2026)","raw_type":"article"}],"best_oa_location":{"id":"doi:10.1186/s40900-026-01000-5","doi":"https://doi.org/10.1186/s40900-026-01000-5","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s40900-026-01000-5","pdf_url":"https://link.springer.com/content/pdf/10.1186/s40900-026-01000-5.pdf","source":{"id":"https://openalex.org/S2739225236","display_name":"Research Involvement and Engagement","issn_l":"2056-7529","issn":["2056-7529"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","jufo-1","ki-jl-1","norway-1","poland-20","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Research Involvement and Engagement","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.98580002784729,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"study_designs":[{"display_name":"Observational Study","id":"https://openalex.org/study-designs/observational-study"}],"awards":[{"id":"https://openalex.org/G3874372842","display_name":null,"funder_award_id":"JP24wm0625301","funder_id":"https://openalex.org/F4320311405","funder_display_name":"Japan Agency for Medical Research and Development"},{"id":"https://openalex.org/G4783637946","display_name":null,"funder_award_id":"JPMH23FC1008","funder_id":"https://openalex.org/F4320321945","funder_display_name":"Ministry of Health, Labour and Welfare"},{"id":"https://openalex.org/G7899332600","display_name":null,"funder_award_id":"JPMH23FC1008","funder_id":"https://openalex.org/F4320334764","funder_display_name":"Japan Society for the Promotion of Science"},{"id":"https://openalex.org/G8141355416","display_name":null,"funder_award_id":"JP24ek0109631","funder_id":"https://openalex.org/F4320311405","funder_display_name":"Japan Agency for Medical Research and Development"}],"funders":[{"id":"https://openalex.org/F4320311405","display_name":"Japan Agency for Medical Research and Development","ror":"https://ror.org/004rtk039"},{"id":"https://openalex.org/F4320321945","display_name":"Ministry of Health, Labour and Welfare","ror":"https://ror.org/03mwa7s65"},{"id":"https://openalex.org/F4320334764","display_name":"Japan Society for the Promotion of Science","ror":"https://ror.org/00hhkn466"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W7224815108.pdf","grobid_xml":"https://content.openalex.org/works/W7224815108.grobid-xml"},"referenced_works_count":20,"referenced_works":["https://openalex.org/W2028994146","https://openalex.org/W2100905299","https://openalex.org/W2111574240","https://openalex.org/W2739751169","https://openalex.org/W2766144316","https://openalex.org/W2794288119","https://openalex.org/W2794372865","https://openalex.org/W2802993040","https://openalex.org/W2902219846","https://openalex.org/W2977965623","https://openalex.org/W2988635274","https://openalex.org/W3093610909","https://openalex.org/W3200808625","https://openalex.org/W4393116621","https://openalex.org/W4395675227","https://openalex.org/W4403233268","https://openalex.org/W4403459474","https://openalex.org/W4412530175","https://openalex.org/W4417225709","https://openalex.org/W7117470325"],"related_works":["https://openalex.org/W2988635274","https://openalex.org/W1815922908","https://openalex.org/W1557636690","https://openalex.org/W3194829314","https://openalex.org/W2271214362","https://openalex.org/W1990510141","https://openalex.org/W2613493456","https://openalex.org/W3201117515","https://openalex.org/W1710580487","https://openalex.org/W1965349674"],"abstract_inverted_index":{"Amyotrophic":[0,318],"lateral":[1,319],"sclerosis":[2,320],"(ALS)":[3,321],"remains":[4,39],"an":[5,353,408],"incurable,":[6],"progressive":[7],"neurodegenerative":[8],"disease.":[9],"Patient":[10],"and":[11,27,64,83,101,144,150,213,222,251,269,290,294,300,310,332,347,358,369,382,403,472,513,518,531,582,592],"public":[12,351,359],"involvement":[13,136],"(PPI)":[14],"has":[15],"been":[16],"increasingly":[17,340],"recognized":[18],"as":[19,356],"a":[20,84,177,197,228,323,420,507],"means":[21],"to":[22,54,65,118,130,190,254,256,342,364,393,418,453,461,474,487,510,585],"enhance":[23],"the":[24,60,76,110,121,126,223,301,328,350,412,425,608],"relevance,":[25],"quality,":[26],"efficiency":[28],"of":[29,112,161,200,262,349,435,610],"research;":[30],"however,":[31],"its":[32],"implementation":[33],"in":[34,41,80,91,137,145,186,219,283,316,396,415,456,528,566,596,599,603],"intractable":[35],"neurological":[36],"disease":[37,325],"research":[38,139,147,257,366,466,517,598],"limited":[40,205,267],"Japan.":[42,317],"This":[43,264],"webinar-based":[44],"study,":[45],"conducted":[46],"through":[47],"nationally":[48],"advertised":[49],"ALS":[50,62,100,201,250,284,315,381,402,516,597],"Caf\u00e9":[51,202],"events,":[52,221],"aimed":[53],"clarify":[55],"current":[56],"PPI":[57,362,436,444,551],"awareness":[58,261,268],"among":[59,183,246,557],"Japanese":[61,247,378,558],"community":[63,303],"explore":[66],"strategies":[67],"for":[68,135,306,314,490],"promoting":[69],"patient":[70,86,281,302,308,357],"advocacy.":[71],"Data":[72],"were":[73,192,196],"collected":[74],"during":[75],"\u201cALS":[77,413],"Caf\u00e9\u201d":[78,414],"held":[79],"September":[81,416],"2024":[82,417],"subsequent":[85,164],"advocacy":[87,309],"training":[88,165,224,508,527],"program":[89,166,225,509],"organized":[90],"October":[92,529],"2025.":[93],"Among":[94,125],"79":[95,426],"respondents":[96,128],"(42":[97],"patients":[98,212,248,346,379,512,559,591],"with":[99,109,170,204,249,345,380,386,401,537,560,580],"37":[102],"caregivers),":[103],"approximately":[104],"80%":[105,431],"reported":[106],"being":[107],"unfamiliar":[108],"concept":[111,122],"PPI,":[113,387],"yet":[114,554],"72.2%":[115],"expressed":[116],"willingness":[117,189,245,272],"participate":[119,191,218],"once":[120,440,569],"was":[123,133,167,373,533],"explained.":[124],"57":[127],"willing":[129],"participate,":[131],"interest":[132,565],"highest":[134],"translating":[138],"findings":[140,241,467,547],"into":[141,470],"practice":[142],"(56.1%)":[143],"identifying":[146],"themes":[148],"(47.4%),":[149],"most":[151],"(93%)":[152],"stated":[153,244,271],"that":[154,274,326,465,549,576],"they":[155,390,450,520],"expected":[156],"no":[157,336],"remuneration":[158],"beyond":[159],"reimbursement":[160],"expenses.":[162],"The":[163],"well":[168,535,555],"received,":[169,536],"mean":[171],"evaluation":[172,226],"scores":[173,540],"exceeding":[174],"8.0":[175],"on":[176,500],"0\u201310":[178],"scale,":[179],"indicating":[180],"high":[181,270,538],"comprehensibility":[182],"participants":[184,203],"(changes":[185],"knowledge":[187],"or":[188,361,388],"not":[193,210,217,485,553],"assessed).":[194],"Respondents":[195],"self-selected":[198],"group":[199],"demographic":[206],"characterization":[207],"who":[208,215,406,428],"may":[209,602],"represent":[211],"caregivers":[214,253,405,514],"do":[216],"such":[220],"lacked":[227],"pre-training":[229],"baseline;":[230],"these":[231],"limitations":[232],"should":[233,480],"be":[234,454,488],"considered":[235],"when":[236],"interpreting":[237],"our":[238],"findings.":[239],"These":[240],"reveal":[242],"substantial":[243],"their":[252,383,404,491,496],"contribute":[255],"despite":[258],"low":[259],"baseline":[260],"PPI.":[263,423],"gap":[265],"between":[266,298],"suggests":[273],"targeted":[275],"educational":[276],"efforts":[277],"could":[278,521,588],"meaningfully":[279],"expand":[280],"engagement":[282,292],"research.":[285,457],"Systematic":[286],"awareness-building":[287],"initiatives,":[288],"structured":[289],"accessible":[291,581],"opportunities,":[293],"sustained":[295],"collaborative":[296],"relationships":[297],"researchers":[299,479],"are":[304,339,385,468],"essential":[305],"strengthening":[307],"accelerating":[311],"drug":[312],"development":[313,609],"is":[322,334,552,563,571],"serious":[324],"damages":[327],"nerves":[329],"controlling":[330],"movement,":[331],"there":[333,562],"currently":[335],"cure.":[337],"Researchers":[338],"encouraged":[341],"work":[343],"together":[344,579],"members":[348],"\u2014":[352,363],"approach":[354],"known":[355,374,556],"involvement,":[360],"make":[365,463],"more":[367,446,590],"relevant":[368],"useful.":[370],"However,":[371],"little":[372],"about":[375,422,430],"how":[376,519],"familiar":[377],"families":[384,593],"whether":[389],"would":[391,451],"want":[392],"take":[394,594],"part":[395,568,595],"it.":[397],"We":[398,524,574],"asked":[399],"people":[400,427,459,483],"attended":[407],"online":[409],"event":[410],"called":[411],"complete":[419],"questionnaire":[421],"Of":[424],"responded,":[429],"had":[432],"never":[433],"heard":[434],"before.":[437],"Even":[438],"so,":[439],"we":[441,502,504],"explained":[442,572],"what":[443,501],"means,":[445],"than":[447],"70%":[448],"said":[449],"like":[452],"involved":[455],"Most":[458,482],"wanted":[460,473,495],"help":[462,475,511,589,605],"sure":[464],"put":[469],"practice,":[471],"choose":[476],"which":[477,601],"questions":[478],"study.":[481],"did":[484],"expect":[486],"paid":[489],"time,":[492],"although":[493,550],"many":[494],"expenses":[497],"covered.":[498,545],"Based":[499],"learned,":[503],"then":[505],"created":[506],"understand":[515],"become":[522],"involved.":[523],"delivered":[525],"this":[526],"2025,":[530],"it":[532,570],"very":[534],"understanding":[539],"across":[541],"all":[542],"14":[543],"topics":[544],"Our":[546],"show":[548],"ALS,":[561],"strong":[564],"taking":[567],"clearly.":[573],"believe":[575],"ongoing":[577],"education,":[578],"low-burden":[583],"ways":[584],"get":[586],"involved,":[587],"Japan,":[600],"turn":[604],"speed":[606],"up":[607],"new":[611],"treatments.":[612]},"counts_by_year":[],"updated_date":"2026-11-05T12:25:35.769452","created_date":"2026-10-31T00:00:00"}
