TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in Canada

Introduction Concussion affects over 400 000 Canadians annually, with a range of causes and impacts on health-related quality of life. Research to date has disproportionately focused on athletes, military personnel and level I trauma centre patients, and may not be applicable to the broader communit...

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Main Authors: Charlotte Anderson, Nick Reed, Andrée-Anne Ledoux, Roger Zemek, Keith Yeates, Carolyn Emery, Pamela Fuselli, Isabelle J Gagnon, Kathryn J Schneider, Sharon Johnston, David R Howell, Richard Webster, Peter Tanuseputro, Andrew R Mayer, Miriam H Beauchamp, Rebecca Robillard, Christina L Master, Kristine Dalton, Khaled El Emam, John Leddy, Noah Silverberg, Jennifer Dawson, Martin H Osmond, Stephanie Cowle, Christopher Giza, Monica Lamoureux, Nicholas Barrowman, Kitty Chen, Daniel J Corwin, Erin Fox, Lisa M Albrecht, Araba Chintoh, Achelle Cortel-LeBlanc, Miguel Cortel-LeBlanc, Andrew Dodd, Steven Hicks, Stephen Alexander Kutcher, Carlos Lalonde, Rebekah C Mannix, Ivan Terekhov, Cheryl Lea Wellington
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Language:English
Published: BMJ Publishing Group 2025-04-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/15/4/e095292.full
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author Charlotte Anderson
Nick Reed
Andrée-Anne Ledoux
Roger Zemek
Keith Yeates
Carolyn Emery
Pamela Fuselli
Isabelle J Gagnon
Kathryn J Schneider
Sharon Johnston
David R Howell
Richard Webster
Peter Tanuseputro
Andrew R Mayer
Miriam H Beauchamp
Rebecca Robillard
Christina L Master
Kristine Dalton
Khaled El Emam
John Leddy
Noah Silverberg
Jennifer Dawson
Martin H Osmond
Stephanie Cowle
Christopher Giza
Monica Lamoureux
Nicholas Barrowman
Kitty Chen
Daniel J Corwin
Erin Fox
Lisa M Albrecht
Araba Chintoh
Achelle Cortel-LeBlanc
Miguel Cortel-LeBlanc
Andrew Dodd
Steven Hicks
Stephen Alexander Kutcher
Carlos Lalonde
Rebekah C Mannix
Ivan Terekhov
Cheryl Lea Wellington
author_facet Charlotte Anderson
Nick Reed
Andrée-Anne Ledoux
Roger Zemek
Keith Yeates
Carolyn Emery
Pamela Fuselli
Isabelle J Gagnon
Kathryn J Schneider
Sharon Johnston
David R Howell
Richard Webster
Peter Tanuseputro
Andrew R Mayer
Miriam H Beauchamp
Rebecca Robillard
Christina L Master
Kristine Dalton
Khaled El Emam
John Leddy
Noah Silverberg
Jennifer Dawson
Martin H Osmond
Stephanie Cowle
Christopher Giza
Monica Lamoureux
Nicholas Barrowman
Kitty Chen
Daniel J Corwin
Erin Fox
Lisa M Albrecht
Araba Chintoh
Achelle Cortel-LeBlanc
Miguel Cortel-LeBlanc
Andrew Dodd
Steven Hicks
Stephen Alexander Kutcher
Carlos Lalonde
Rebekah C Mannix
Ivan Terekhov
Cheryl Lea Wellington
author_sort Charlotte Anderson
collection DOAJ
description Introduction Concussion affects over 400 000 Canadians annually, with a range of causes and impacts on health-related quality of life. Research to date has disproportionately focused on athletes, military personnel and level I trauma centre patients, and may not be applicable to the broader community. The TRANSCENDENT Concussion Research Program aims to address patient- and clinician-identified research priorities, through the integration of clinical data from patients of all ages and injury mechanisms, patient-reported outcomes and objective biomarkers across factors of intersectionality. Seeking guidance from our Community Advisory Committee will ensure meaningful patient partnership and research findings that are relevant to the wider concussion community.Methods and analysis This prospective observational cohort study will recruit 5500 participants over 5 years from three 360 Concussion Care clinic locations across Ontario, Canada, with a subset of participants enrolling in specific objective assessments including testing of autonomic function, exercise tolerance, vision, advanced neuroimaging and fluid biomarkers. Analysis will be predicated on pre-specified research questions, and data shared with the Ontario Brain Institute’s Brain-CODE database. This work will represent one of the largest concussion databases to date, and by sharing it, we will advance the field of concussion and prevent siloing within brain health research.Ethics and dissemination This study was approved by the Children’s Hospital of Eastern Ontario Research Ethics Board and preregistered on OSF (25 June 2024); https://doi.org/10.17605/OSF.IO/HYDZC. Dissemination of findings will be multifaceted, including conference presentations, peer-reviewed publications and sharing of adapted materials (eg, videos, infographics, plain language summaries) with community groups and key knowledge users.
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spelling doaj-art-e85ed933d4ca4bb7b713ae2a81580b992025-08-20T01:47:33ZengBMJ Publishing GroupBMJ Open2044-60552025-04-0115410.1136/bmjopen-2024-095292TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in CanadaCharlotte Anderson0Nick Reed1Andrée-Anne Ledoux2Roger Zemek3Keith Yeates4Carolyn Emery5Pamela Fuselli6Isabelle J Gagnon7Kathryn J Schneider8Sharon Johnston9David R Howell10Richard Webster11Peter Tanuseputro12Andrew R Mayer13Miriam H Beauchamp14Rebecca Robillard15Christina L Master16Kristine Dalton17Khaled El Emam18John Leddy19Noah Silverberg20Jennifer Dawson21Martin H Osmond22Stephanie Cowle23Christopher Giza24Monica Lamoureux25Nicholas Barrowman26Kitty Chen27Daniel J Corwin28Erin Fox29Lisa M Albrecht30Araba Chintoh31Achelle Cortel-LeBlanc32Miguel Cortel-LeBlanc33Andrew Dodd34Steven Hicks35Stephen Alexander Kutcher36Carlos Lalonde37Rebekah C Mannix38Ivan Terekhov39Cheryl Lea Wellington40UK Health Security Agency, London, UK12 Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada1 Children`s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada37 Pediatrics, Children`s Hospital of Eastern Ontario, Ottawa, Ontario, Canada4 Department of Psychology, University of Calgary, Calgary, Alberta, CanadaSport Injury Prevention Research Centre, Faculty of Kinesiology and Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada2Parachute, Toronto, ON, CanadaDivision of Pediatric Emergency Medicine, McGill University Health Centre, Montreal Children’s Hospital, Montreal, Quebec, CanadaSport Injury Prevention Research Centre, Faculty of Kinesiology, University of Calgary, Calgary, Alberta, CanadaUniversity of Ottawa Department of Family Medicine, Ottawa, Ontario, CanadaDepartment of Orthopedics, University of Colorado Anschutz, Aurora, Colorado, USA1 Nuffield Department of Clinical Neurosciences, University of Oxford, Oxford, Oxfordshire, UK2 Department of Palliative Care, Bruyère Health Research Institute, Ottawa, Ontario, Canada3 Neurology and Psychiatry, University of New Mexico School of Medicine, Albuquerque, New Mexico, USACentre de recherche, CHU Sainte-Justine, Montréal, Québec, CanadaSchool of Psychology, University of Ottawa, Ottawa, Ontario, CanadaDepartment of Pediatrics and Orthopaedic Surgery, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USASchool of Optometry & Vision Science, University of Waterloo, Waterloo, Ontario, Canada9 Electronic Health Information Laboratory, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada9 University at Buffalo Concussion Management Clinic, UBMD Orthopaedics and Sports Medicine, Buffalo, New York, USA1 Department of Psychology, The University of British Columbia, Vancouver, British Columbia, Canada3University of Ottawa, Ottawa, CanadaDepartments of Pediatrics and Emergency Medicine, University of Ottawa, Ottawa, Ontario, Canada2Parachute, Toronto, ON, CanadaPediatrics and Neurosurgery, University of California, Los Angeles, California, USAChildren`s Hospital of Eastern Ontario, Ottawa, Ontario, Canada3 CHEO Research Institute, Ottawa, Ontario, Canada1 Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, CanadaDivision of Emergency Medicine, Children`s Hospital of Philadelphia, Philadelphia, PA, USADepartment of Surgery, University of Texas Health Science Center, Houston, Texas, USAChildren’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, CanadaPsychiatry, University of Calgary, Calgary, Alberta, CanadaFaculty of Medicine, University of Ottawa, Ottawa, Ontario, CanadaFaculty of Medicine, University of Ottawa, Ottawa, Ontario, CanadaChildren’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, CanadaPenn State College of Medicine, Hershey, Pennsylvania, USAChildren’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, CanadaHomewood Health, Guelph, Ontario, CanadaPediatrics, Boston Children’s Hospital, Boston, Massachusetts, USAChildren’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, CanadaFaculty of Medicine, The University of British Columbia, Vancouver, British Columbia, CanadaIntroduction Concussion affects over 400 000 Canadians annually, with a range of causes and impacts on health-related quality of life. Research to date has disproportionately focused on athletes, military personnel and level I trauma centre patients, and may not be applicable to the broader community. The TRANSCENDENT Concussion Research Program aims to address patient- and clinician-identified research priorities, through the integration of clinical data from patients of all ages and injury mechanisms, patient-reported outcomes and objective biomarkers across factors of intersectionality. Seeking guidance from our Community Advisory Committee will ensure meaningful patient partnership and research findings that are relevant to the wider concussion community.Methods and analysis This prospective observational cohort study will recruit 5500 participants over 5 years from three 360 Concussion Care clinic locations across Ontario, Canada, with a subset of participants enrolling in specific objective assessments including testing of autonomic function, exercise tolerance, vision, advanced neuroimaging and fluid biomarkers. Analysis will be predicated on pre-specified research questions, and data shared with the Ontario Brain Institute’s Brain-CODE database. This work will represent one of the largest concussion databases to date, and by sharing it, we will advance the field of concussion and prevent siloing within brain health research.Ethics and dissemination This study was approved by the Children’s Hospital of Eastern Ontario Research Ethics Board and preregistered on OSF (25 June 2024); https://doi.org/10.17605/OSF.IO/HYDZC. Dissemination of findings will be multifaceted, including conference presentations, peer-reviewed publications and sharing of adapted materials (eg, videos, infographics, plain language summaries) with community groups and key knowledge users.https://bmjopen.bmj.com/content/15/4/e095292.full
spellingShingle Charlotte Anderson
Nick Reed
Andrée-Anne Ledoux
Roger Zemek
Keith Yeates
Carolyn Emery
Pamela Fuselli
Isabelle J Gagnon
Kathryn J Schneider
Sharon Johnston
David R Howell
Richard Webster
Peter Tanuseputro
Andrew R Mayer
Miriam H Beauchamp
Rebecca Robillard
Christina L Master
Kristine Dalton
Khaled El Emam
John Leddy
Noah Silverberg
Jennifer Dawson
Martin H Osmond
Stephanie Cowle
Christopher Giza
Monica Lamoureux
Nicholas Barrowman
Kitty Chen
Daniel J Corwin
Erin Fox
Lisa M Albrecht
Araba Chintoh
Achelle Cortel-LeBlanc
Miguel Cortel-LeBlanc
Andrew Dodd
Steven Hicks
Stephen Alexander Kutcher
Carlos Lalonde
Rebekah C Mannix
Ivan Terekhov
Cheryl Lea Wellington
TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in Canada
BMJ Open
title TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in Canada
title_full TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in Canada
title_fullStr TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in Canada
title_full_unstemmed TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in Canada
title_short TRANSCENDENT (Transforming Research by Assessing Neuroinformatics across the Spectrum of Concussion by Embedding iNterdisciplinary Data-collection to Enable Novel Treatments): protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in Canada
title_sort transcendent transforming research by assessing neuroinformatics across the spectrum of concussion by embedding interdisciplinary data collection to enable novel treatments protocol for a prospective observational cohort study of concussion patients with embedded comparative effectiveness research within a network of learning health system concussion clinics in canada
url https://bmjopen.bmj.com/content/15/4/e095292.full
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