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The Comprehensive Analysis Platform to Understand Remedy and Eliminate ALS (CAPTURE ALS) is a Canadian platform designed to create the most comprehensive picture of people living with ALS with the objective of facilitating ALS research initiatives worldwide.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>The main aims of CAPTURE ALS include: (1) to characterize ALS and healthy controls with biosamples and data in order to provide the most comprehensive picture of individuals living with ALS to date; (2) to create a de-identified database and biosample repository linked to detailed clinical information; and (3) to develop and implement an inclusive and transparent participant engagement strategy to be active throughout all stages of CAPTURE ALS.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Methods\/Results<\/jats:title>\n                    <jats:p>CAPTURE ALS is a prospective, multicenter, observational, longitudinal study. People living with ALS, or a related disease and healthy controls undergo a harmonized protocol including the collection of detailed clinical information, neurological and cognitive examination, speech recording, advanced magnetic resonance imaging, and biosampling. Data and samples are stored in a biobank operating under an open science governance framework. An inclusive and transparent participant engagement strategy was designed and implemented throughout all stages of CAPTURE ALS. Four sites are operating in the consortium with a fifth being onboarded. The target enrollment is 120 affected participants and 50 controls, with the first participant visit having occurred in March 2022. Recruitment is ongoing.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec004\">\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>CAPTURE ALS is a scalable clinical research platform that connects scientists and patients to facilitate efficient translational research. The unique and deeply phenotyped data and biosamples are a global resource towards the development of biomarkers and understanding ALS biology. This study is registered at clinicaltrials.gov (NCT: NCT05204017).<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pone.0332430","type":"journal-article","created":{"date-parts":[[2025,12,4]],"date-time":"2025-12-04T19:01:34Z","timestamp":1764874894000},"page":"e0332430","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["Comprehensive analysis platform to understand, remedy, and eliminate amyotrophic lateral sclerosis (CAPTURE ALS): Study protocol for a Canadian multicenter, multimodal, longitudinal observational 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Available from: https:\/\/cdmrp.health.mil\/alsrp\/resources\/Biorepositories_biofluids_celllines"},{"key":"pone.0332430.ref014","article-title":"The Canadian ALS Neuroimaging Consortium (CALSNIC) - a multicentre platform for standardized imaging and clinical studies in ALS","author":"S Kalra","year":"2020","journal-title":"medRxiv"},{"issue":"4","key":"pone.0332430.ref015","doi-asserted-by":"crossref","first-page":"1200","DOI":"10.1002\/jmri.26904","article-title":"Reliability of 3D texture analysis: A multicenter MRI study of the brain","volume":"51","author":"D Ta","year":"2020","journal-title":"J Magn Reson Imaging"},{"key":"pone.0332430.ref016","doi-asserted-by":"crossref","first-page":"102385","DOI":"10.1016\/j.nicl.2020.102385","article-title":"Involvement of the dentate nucleus in the pathophysiology of amyotrophic lateral sclerosis: A multi-center and multi-modal neuroimaging study","volume":"28","author":"K Bharti","year":"2020","journal-title":"Neuroimage Clin"},{"issue":"8","key":"pone.0332430.ref017","doi-asserted-by":"crossref","DOI":"10.1212\/WNL.0000000000010235","article-title":"A prospective harmonized multicenter DTI study of cerebral white matter degeneration in ALS","volume":"95","author":"S Kalra","year":"2020","journal-title":"Neurology"},{"issue":"3","key":"pone.0332430.ref018","doi-asserted-by":"crossref","first-page":"1641","DOI":"10.1007\/s11682-020-00359-7","article-title":"Neuroanatomical associations of the Edinburgh cognitive and Behavioural ALS screen (ECAS)","volume":"15","author":"S Chenji","year":"2021","journal-title":"Brain Imaging Behav"},{"issue":"8","key":"pone.0332430.ref019","article-title":"Progressive Neurochemical Abnormalities in Cognitive and Motor Subgroups of Amyotrophic Lateral Sclerosis: A Prospective Multicenter Study","volume":"97","author":"D Ta","year":"2021","journal-title":"Neurology"},{"issue":"5","key":"pone.0332430.ref020","doi-asserted-by":"crossref","first-page":"1519","DOI":"10.1002\/hbm.25738","article-title":"Distinct patterns of progressive gray and white matter degeneration in amyotrophic lateral sclerosis","volume":"43","author":"A Ishaque","year":"2022","journal-title":"Hum Brain Mapp"},{"issue":"1","key":"pone.0332430.ref021","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1007\/s12021-021-09516-9","article-title":"The C-BIG Repository: an Institution-Level Open Science Platform","volume":"20","author":"S Das","year":"2022","journal-title":"Neuroinformatics"},{"key":"pone.0332430.ref022","unstructured":"About SPOR - CIHR. https:\/\/cihr-irsc.gc.ca\/e\/51036.html. Accessed 2024 June 19."},{"key":"pone.0332430.ref023","unstructured":"Strategy for Patient-Oriented Research - Patient Engagement Framework. https:\/\/cihr-irsc.gc.ca\/e\/48413.html. Accessed 2024 June 19."},{"key":"pone.0332430.ref024","article-title":"Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis","volume":"363","author":"JC Crocker","year":"2018","journal-title":"BMJ"},{"key":"pone.0332430.ref025","doi-asserted-by":"crossref","first-page":"89","DOI":"10.1186\/1472-6963-14-89","article-title":"Patient engagement in research: a systematic review","volume":"14","author":"JP Domecq","year":"2014","journal-title":"BMC Health Serv Res"},{"issue":"3","key":"pone.0332430.ref026","doi-asserted-by":"crossref","first-page":"359","DOI":"10.1377\/hlthaff.2018.05067","article-title":"Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute","volume":"38","author":"LP Forsythe","year":"2019","journal-title":"Health Aff (Millwood)"},{"issue":"5","key":"pone.0332430.ref027","doi-asserted-by":"crossref","first-page":"637","DOI":"10.1111\/j.1369-7625.2012.00795.x","article-title":"Mapping the impact of patient and public involvement on health and social care research: a systematic review","volume":"17","author":"J Brett","year":"2014","journal-title":"Health Expect"},{"key":"pone.0332430.ref028","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1080\/21678421.2020.1804939","article-title":"Engaging ALS patients and caregivers (the ALS research ambassadors) to help design the REFINE-ALS biomarker study","volume":"22","author":"JD Berry","year":"2021","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"5","key":"pone.0332430.ref029","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1080\/146608200300079536","article-title":"El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis","volume":"1","author":"BR Brooks","year":"2000","journal-title":"Amyotroph Lateral Scler Other Motor Neuron Disord"},{"key":"pone.0332430.ref030","unstructured":"International Council for Harmonization of Technical Requirements for Pharmaceuticals for Human Use (ICH). ICH Official web site: ICH. https:\/\/www.ich.org\/page\/efficacy-guidelines#6. 2023. Accessed 2024 April 5."},{"key":"pone.0332430.ref031","unstructured":"Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans \u2013 TCPS 2. 2022. https:\/\/ethics.gc.ca\/eng\/policy-politique_tcps2-eptc2_2022.html"},{"key":"pone.0332430.ref032","doi-asserted-by":"crossref","first-page":"303","DOI":"10.1080\/21678421.2019.1587634","article-title":"Defining pre-symptomatic amyotrophic lateral sclerosis","volume":"20","author":"M Benatar","year":"2019","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"key":"pone.0332430.ref033","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1016\/S0022-510X(99)00210-5","article-title":"The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III)","volume":"169","author":"JM Cedarbaum","year":"1999","journal-title":"J Neurol Sci"},{"key":"pone.0332430.ref034","doi-asserted-by":"crossref","first-page":"120","DOI":"10.3109\/21678421.2014.952641","article-title":"The R of ALSFRS-R: does it really mirror functional respiratory involvement in amyotrophic lateral sclerosis?","volume":"16","author":"S Pinto","year":"2015","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"key":"pone.0332430.ref035","doi-asserted-by":"crossref","first-page":"500","DOI":"10.1080\/21678421.2021.2016838","article-title":"Using the ALSFRS-R in multicentre clinical trials for amyotrophic lateral sclerosis: potential limitations in current standard operating procedures","volume":"23","author":"JNE Bakers","year":"2022","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"2","key":"pone.0332430.ref036","doi-asserted-by":"crossref","first-page":"319","DOI":"10.1183\/09031936.05.00034805","article-title":"Standardisation of spirometry","volume":"26","author":"MR Miller","year":"2005","journal-title":"Eur Respir J"},{"key":"pone.0332430.ref037","doi-asserted-by":"crossref","first-page":"528","DOI":"10.1080\/21678421.2017.1354995","article-title":"Comparison of slow and forced vital capacities on ability to predict survival in ALS","volume":"18","author":"S Pinto","year":"2017","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"1","key":"pone.0332430.ref038","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1186\/s12883-017-0829-y","article-title":"Finger tapping impairments are highly sensitive for evaluating upper motor neuron lesions","volume":"17","author":"A Shirani","year":"2017","journal-title":"BMC Neurol"},{"key":"pone.0332430.ref039","doi-asserted-by":"crossref","first-page":"101","DOI":"10.3109\/21678421.2015.1054292","article-title":"Eye-tracking in amyotrophic lateral sclerosis: A longitudinal study of saccadic and cognitive tasks","volume":"17","author":"M Proudfoot","year":"2015","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"6","key":"pone.0332430.ref040","doi-asserted-by":"crossref","DOI":"10.16910\/jemr.12.6.8","article-title":"Saccadic intrusions in amyotrophic lateral sclerosis (ALS)","volume":"12","author":"W Becker","year":"2019","journal-title":"J Eye Mov Res"},{"issue":"1","key":"pone.0332430.ref041","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1007\/s00415-023-11957-y","article-title":"Impairment of oculomotor functions in patients with early to advanced amyotrophic lateral sclerosis","volume":"271","author":"E Aust","year":"2024","journal-title":"J Neurol"},{"issue":"2","key":"pone.0332430.ref042","doi-asserted-by":"crossref","first-page":"206","DOI":"10.1093\/ptj\/67.2.206","article-title":"Interrater reliability of a modified Ashworth scale of muscle spasticity","volume":"67","author":"RW Bohannon","year":"1987","journal-title":"Phys Ther"},{"year":"1976","author":"Medical Research Council","key":"pone.0332430.ref043"},{"key":"pone.0332430.ref044","first-page":"231","article-title":"Timing of speech deterioration in people with amyotrophic lateral sclerosis","volume":"10","author":"LJ Ball","year":"2002","journal-title":"J Med Speech Lang Pathol"},{"issue":"4","key":"pone.0332430.ref045","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1080\/14015439.2019.1687748","article-title":"Acoustic analysis of voice in bulbar amyotrophic lateral sclerosis: a systematic review and meta-analysis of studies","volume":"45","author":"R Chiaramonte","year":"2020","journal-title":"Logoped Phoniatr Vocol"},{"key":"pone.0332430.ref046","doi-asserted-by":"crossref","unstructured":"Norel R, Pietrowicz M, Agurto C, Rishoni S, Cecchi G. 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One"},{"issue":"6","key":"pone.0332430.ref050","doi-asserted-by":"crossref","first-page":"1158","DOI":"10.1044\/jshr.3606.1158","article-title":"Multiple orofacial indices in amyotrophic lateral sclerosis","volume":"36","author":"R DePaul","year":"1993","journal-title":"J Speech Hear Res"},{"key":"pone.0332430.ref051","doi-asserted-by":"crossref","first-page":"22","DOI":"10.1016\/j.jcomdis.2017.05.002","article-title":"Spatiotemporal movement variability in ALS: Speaking rate effects on tongue, lower lip, and jaw motor control","volume":"67","author":"M Kuruvilla-Dugdale","year":"2017","journal-title":"J Commun Disord"},{"issue":"1","key":"pone.0332430.ref052","doi-asserted-by":"crossref","first-page":"258","DOI":"10.1044\/2017_AJSLP-16-0230","article-title":"Articulatory Kinematic Characteristics Across the Dysarthria Severity Spectrum in Individuals With Amyotrophic Lateral Sclerosis","volume":"27","author":"J Lee","year":"2018","journal-title":"Am J Speech Lang Pathol"},{"issue":"8","key":"pone.0332430.ref053","doi-asserted-by":"crossref","first-page":"2625","DOI":"10.1044\/2020_JSLHR-19-00309","article-title":"Tongue- and Jaw-Specific Articulatory Changes and Their Acoustic Consequences in Talkers With Dysarthria due to Amyotrophic Lateral Sclerosis: Effects of Loud, Clear, and Slow Speech","volume":"63","author":"AS Mefferd","year":"2020","journal-title":"J Speech Lang Hear Res"},{"issue":"5","key":"pone.0332430.ref054","doi-asserted-by":"crossref","first-page":"887","DOI":"10.1044\/2016_JSLHR-S-15-0238","article-title":"Speech Movement Measures as Markers of Bulbar Disease in Amyotrophic Lateral Sclerosis","volume":"59","author":"S Shellikeri","year":"2016","journal-title":"J Speech Lang Hear Res"},{"issue":"1","key":"pone.0332430.ref055","first-page":"1","article-title":"Speech in ALS: Longitudinal Changes in Lips and Jaw Movements and Vowel Acoustics","volume":"21","author":"Y Yunusova","year":"2013","journal-title":"J Med Speech Lang Pathol"},{"issue":"2","key":"pone.0332430.ref056","doi-asserted-by":"crossref","first-page":"758","DOI":"10.1121\/10.0003332","article-title":"Analysing spectral changes over time to identify articulatory impairments in dysarthria","volume":"149","author":"A Slis","year":"2021","journal-title":"J Acoust Soc Am"},{"key":"pone.0332430.ref057","doi-asserted-by":"crossref","first-page":"42","DOI":"10.1080\/21678421.2019.1697888","article-title":"Reliability and validity of speech & pause measures during passage reading in ALS","volume":"21","author":"C Barnett","year":"2020","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"1","key":"pone.0332430.ref058","doi-asserted-by":"crossref","first-page":"59","DOI":"10.1044\/2019_JSLHR-19-00178","article-title":"Automated Acoustic Analysis of Oral Diadochokinesis to Assess Bulbar Motor Involvement in Amyotrophic Lateral Sclerosis","volume":"63","author":"P Rong","year":"2020","journal-title":"J Speech Lang Hear Res"},{"issue":"1","key":"pone.0332430.ref059","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0147573","article-title":"Profiling Speech and Pausing in Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Dementia (FTD)","volume":"11","author":"Y Yunusova","year":"2016","journal-title":"PLoS One"},{"issue":"48","key":"pone.0332430.ref060","first-page":"2422","article-title":"A protocol for comprehensive assessment of bulbar dysfunction in amyotrophic lateral sclerosis (ALS)","author":"Y Yunusova","year":"2011","journal-title":"J Vis Exp"},{"issue":"8","key":"pone.0332430.ref061","article-title":"Progressive Neurochemical Abnormalities in Cognitive and Motor Subgroups of Amyotrophic Lateral Sclerosis: A Prospective Multicenter Study","volume":"97","author":"D Ta","year":"2021","journal-title":"Neurology"},{"issue":"10","key":"pone.0332430.ref062","doi-asserted-by":"crossref","first-page":"1537","DOI":"10.1038\/s41431-018-0177-4","article-title":"Project MinE: study design and pilot analyses of a large-scale whole-genome sequencing study in amyotrophic lateral sclerosis","volume":"26","author":"Consortium Project MinE ALS Sequencing","year":"2018","journal-title":"Eur J Hum Genet"},{"issue":"10","key":"pone.0332430.ref063","doi-asserted-by":"crossref","first-page":"1918","DOI":"10.1111\/ene.14393","article-title":"Amyotrophic lateral sclerosis: a clinical review","volume":"27","author":"P Masrori","year":"2020","journal-title":"Eur J Neurol"},{"key":"pone.0332430.ref064","doi-asserted-by":"crossref","first-page":"634","DOI":"10.1080\/21678421.2024.2328599","article-title":"Patient engagement in research: lessons learned from CAPTURE ALS, a longitudinal observational ALS study","volume":"25","author":"SK Genuis","year":"2024","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"12","key":"pone.0332430.ref065","doi-asserted-by":"crossref","first-page":"3183","DOI":"10.1016\/j.clinph.2021.08.014","article-title":"Gold Coast diagnostic criteria increase sensitivity in amyotrophic lateral sclerosis","volume":"132","author":"K Pugdahl","year":"2021","journal-title":"Clin Neurophysiol"},{"issue":"2","key":"pone.0332430.ref066","doi-asserted-by":"crossref","first-page":"226","DOI":"10.1038\/s41593-021-01006-0","article-title":"Answer ALS, a large-scale resource for sporadic and familial ALS combining clinical and multi-omics data from induced pluripotent cell lines","volume":"25","author":"EG Baxi","year":"2022","journal-title":"Nat Neurosci"},{"key":"pone.0332430.ref067","doi-asserted-by":"crossref","first-page":"411","DOI":"10.1080\/21678421.2017.1285939","article-title":"Critical issues in ALS case-control studies: the case of the Euro-MOTOR study","volume":"18","author":"F D\u2019Ovidio","year":"2017","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"4","key":"pone.0332430.ref068","doi-asserted-by":"crossref","first-page":"1200","DOI":"10.1002\/jmri.26904","article-title":"Reliability of 3D texture analysis: A multicenter MRI study of the brain","volume":"51","author":"D Ta","year":"2020","journal-title":"J Magn Reson Imaging"},{"issue":"1","key":"pone.0332430.ref069","doi-asserted-by":"crossref","first-page":"53","DOI":"10.3233\/JND-200538","article-title":"The Canadian Neuromuscular Disease Registry 2010-2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry","volume":"8","author":"V Hodgkinson","year":"2021","journal-title":"J Neuromuscul Dis"},{"key":"pone.0332430.ref070","unstructured":"The National Amyotrophic Lateral Sclerosis Registry. https:\/\/neals.org\/als-trials\/nct01772602. Accessed 2025 July 8."},{"issue":"6","key":"pone.0332430.ref071","doi-asserted-by":"crossref","first-page":"1140","DOI":"10.1002\/mus.28244","article-title":"Access for ALL in ALS: A large-scale, inclusive, collaborative consortium to unlock the molecular and genetic mechanisms of amyotrophic lateral sclerosis","volume":"70","author":"JD Berry","year":"2024","journal-title":"Muscle Nerve"},{"issue":"1","key":"pone.0332430.ref072","doi-asserted-by":"crossref","DOI":"10.1093\/braincomms\/fcac029","article-title":"Multicentre appraisal of amyotrophic lateral sclerosis biofluid biomarkers shows primacy of blood neurofilament light chain","volume":"4","author":"AG Thompson","year":"2022","journal-title":"Brain Commun"},{"issue":"10","key":"pone.0332430.ref073","doi-asserted-by":"crossref","first-page":"1537","DOI":"10.1038\/s41431-018-0177-4","article-title":"Project MinE: study design and pilot analyses of a large-scale whole-genome sequencing study in amyotrophic lateral sclerosis","volume":"26","author":"Project MinE ALS Sequencing Consortium","year":"2018","journal-title":"Eur J Hum Genet"}],"container-title":["PLOS One"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0332430","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,4]],"date-time":"2025-12-04T19:01:46Z","timestamp":1764874906000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0332430"}},"subtitle":[],"editor":[{"given":"Massimo","family":"Filippi","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2025,12,4]]},"references-count":73,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2025,12,4]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0332430","relation":{},"ISSN":["1932-6203"],"issn-type":[{"type":"electronic","value":"1932-6203"}],"subject":[],"published":{"date-parts":[[2025,12,4]]}}}