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Publications
Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach
JMIR Pediatrics and Parenting
Authors: Marelli A, Rozenblum R, Bolster-Foucault C, Via-Dufresne Ley A, Maynard N, Amaria K, Galuppi B, Strohm S, Nguyen L, Dawe-McCord C, Putterman C, Kovacs AH, Gorter JW
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Lessons learned in measuring patient engagement in a Canada-wide childhood disability network
Research Involvement and Engagement
Authors: Ogourtsova T, Gonzalez M, Zerbo A, Gavin F, Shikako K, Weiss J, Majnemer A
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Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network
Research Involvement and Engagement
Authors: Yamaguchi S, Costello C, Lalonde C, McCarry S, Majnemer A, Shikako K
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Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad
Acta Paediatrica
Authors: Milette AA, Richter LL, Bourque CJ, Janvier A, Pearce R, Church PT, Synnes A, Luu TM
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Declining incidence of postoperative neonatal brain injury in congenital heart disease
Journal of the American College of Cardiology
Authors: Peyvandi S, Xu D, Barkovich AJ, Gano D, Chau V, Reddy VM, Selvanathan T, Guo T, Gaynor JW, Seed M, Miller SP, McQuillen P
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Neurodevelopment in children with congenital heart disease: An opportunity for the cardiovascular trainee
Canadian Journal of Cardiology
Authors: Chetan D, Selvanathan T, Alzamil J, Chau V, Seed M
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Reliability of active robotic neuro-navigated transcranial magnetic stimulation motor maps
Experimental Brain Research
Authors: Kahl CK, Giuffre A, Wrightson JG, Zewdie E, Condliffe EG, MacMaster FP, Kirton A
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Electric field simulations of transcranial direct current stimulation in children with perinatal stroke
Frontiers in Human Neuroscience
Authors: Carlson HL, Giuffre A, Ciechanski P, Kirton A
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BCI-activated electrical stimulation in children with perinatal stroke and hemiparesis: A pilot study
Frontiers in Human Neuroscience
Authors: Jadavji Z, Kirton A, Metzler MJ, Zewdie E
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Redefining neurodevelopmental impairment: Perspectives of very preterm birth stakeholders
Children
Authors: Synnes A, Chera A, Richter LL, Bone JN, Bourque CJ, Zhang-Jiang S, Pearce R, Janvier A, Luu TM
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Parent-integrated interventions to improve language development in children born very preterm
Children
Authors: Synnes A, Luu TM, Afifi J, Khairy M, de Cabo C, Moddemann D, Hendson L, Reichert A, Coughlin K, Nguyen KA, Richter LL, Bacchini F, Aziz K
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Structural brain network lateralization across childhood and adolescence
Human Brain Mapping
Authors: Craig BT, Geeraert B, Kinney-Lang E, Hilderley AJ, Yeates KO, Kirton A, Noel M, MacMaster FP, Bray S, Barlow KM, Brooks BL, Lebel C, Carlson HL
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Determining the benefits and drawbacks of parents using personal connections and social networks for recruitment in research projects: a qualitative study
Research Involvement and Engagement
Authors: Kim L, Costello C, Golding MA, Janse van Rensburg C, Protudjer JLP, Wittmeier K
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Characteristics of inclusive web-based leisure activities for children with disabilities: Qualitative descriptive study
JMIR Pediatrics and Parenting
Authors: Movahed M, Rue I, Yoo PY, Sogomonian T, Majnemer A, Shikako K
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Developmental care for hospitalized infants with complex congenital heart disease: A science advisory from the american heart association
Journal of the American Heart Association
Authors: Lisanti AJ, Uzark KC, Harrison TM, Peterson JK, Butler SC, Miller TA, Allen KY, Miller SP, Jones CE; American Heart Association Pediatric Cardiovascular Nursing Committee of the Council on Cardiovascular and Stroke Nursing; Council on Lifelong Congenital Heart Disease and Heart Health in the Young; and Council on Hypertension
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Telerehabilitation for children and youth with developmental disabilities and their families: A systematic review
Physical & Occupational Therapy In Pediatrics
Authors: Ogourtsova T, Boychuck Z, O'Donnell M, Ahmed S, Osman G, Majnemer A
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Patient engagement in a national research network: barriers, facilitators, and impacts
Research Involvement and Engagement
Authors: Gonzalez M, Ogourtsova T, Zerbo A, Lalonde C, Spurway A, Gavin F, Shikako K, Weiss JA, Majnemer A.
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Programs to prepare siblings for future roles to support their brother or sister with a neurodevelopmental disability: A scoping review
Current Developmental Disorders Reports
Authors: Nguyen L, Bootsma J, Ketelaar M, Di Rezze B, Jack SM, Gorter JW
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Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom
Research Involvement and Engagement
Authors: Nguyen L, van Oort B, Davis H, van der Meulen E, Dawe-McCord C, Franklin A, Gorter JW, Morris C, Ketelaar M
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Bihemispheric developmental alterations in basal ganglia volumes following unilateral perinatal stroke
NeuroImage: Clinical
Authors: Hassett J, Carlson H, Babwani A, Kirton A
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Risk factors for term-born periventricular white matter injury in children with cerebral palsy: A case-control study
Neurology
Authors: Marefi A, Husein N, Dunbar M, Dewey D, Letourneau N, Oskoui M, Kirton A, Shevell MI; Canadian Cerebral Palsy Registry (CCPR)
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Guilt and regret experienced by parents of children born extremely preterm
Journal of Pediatrics
Authors: Thivierge E, Luu TM, Bourque CJ, Duquette LA, Pearce R, Jaworski M, Barrington KJ, Synnes A, Janvier A
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A personalized genomic results e-booklet, co-designed and pilot-tested by families
PEC Innovation
Authors: Handra J, Guimond C, Jordan I, Lenahan B, Ohs K, Beauchesne R, Adam S, Friedman JM, Birch P
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Differences in neurometabolites and transcranial magnetic stimulation motor maps in children with attention-deficit/hyperactivity disorder
Journal of Psychiatry and Neuroscience
Authors: Kahl CK, Swansburg R, Hai T, Wrightson JG, Bell T, Lemay JF, Kirton A, MacMaster FP
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Development and validation of a prediction model for perinatal arterial ischemic stroke in term neonates
JAMA Network Open
Authors: Srivastava R, Dunbar M, Shevell M, Oskoui M, Basu A, Rivkin MJ, Shany E, de Vries LS, Dewey D, Letourneau N, Hill MD, Kirton A
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Active versus resting neuro-navigated robotic transcranial magnetic stimulation motor mapping
Physiological Reports
Authors: Kahl CK, Giuffre A, Wrightson JG, Kirton A, Condliffe EG, MacMaster FP, Zewdie E
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The case against endovascular thrombectomy in neonates with arterial ischemic stroke
Clinical Neuroradiology
Authors: Kirton A, Jordan LC, Orbach DB, Fullerton HJ
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Robotic mapping of motor cortex in children with perinatal stroke and hemiparesis
Human Brain Mapping
Authors: Kuo HC, Zewdie E, Giuffre A, Gan LS, Carlson HL, Wrightson J, Kirton A
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Early, intensive, lower extremity rehabilitation shows preliminary efficacy after perinatal stroke: Results of a pilot randomized controlled trial
Neurorehabilitation and Neural Repair
Authors: Hurd C, Livingstone D, Brunton K, Smith A, Gorassini M, Watt MJ, Andersen J, Kirton A, Yang JF
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Personality, attitudes, and behaviors predicting perceived benefit in online support groups for caregivers: Mixed methods study
JMIR Nursing
Authors: Milios A, Xiong T, McEwan K, McGrath P
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Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
BMC Pediatrics
Authors: Fishman I, Siden H, Vadeboncoeur C
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Ensuring equity and inclusion in virtual care best practices for diverse populations of youth with chronic pain
Healthcare Quarterly
Authors: Birnie KA, Killackey T, Backlin G, Gavin F, Harris C, Jordan I, Kim L, Marianayagam J, Swidrovich J, Lalonde C, Tunji-Ajayi L, Oberlander T, Kirby-Allen M, Lambert S, Siden H, Swidrovich J, Noel M, Lalloo C, Stinson J.
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Socio-demographic disparities in receipt of clinical health care services during the COVID-19 pandemic for Canadian children with disability
BMC Health Services Research
Authors: Gonzalez M, Zeidan J, Lai J, Yusuf A, Wright N, Steiman M, Karpur A, Shih A, Elsabbagh M, & Shikako K
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Context validation of the child community health inclusion index: a modified e-Delphi study
Cities & Health
Authors: Yoo P, Majnemer A, Wilton R, Ahmed S, & Shikako K
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Informing the development of the Canadian Neurodiversity Platform: What is important to parents of children with neurodevelopmental disabilities?
Child: Care, Health and Development
Authors: Gonzalez M, Saxena S, Chowdhury F, Dyck Holzinger S, Martens R, Oskoui M, Shikako-Thomas K
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Changes in use of a leisure activity mobile app for children with disabilities during the COVID-19 pandemic: Retrospective study
JMIR Pediatrics and Parenting
Authors: Yoo PY, Movahed M, Rue I, Santos CDD, Majnemer A, Shikako K
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Using crowdsourced data to assess the relationship between neighbourhood-level deprivation and the availability of inclusive leisure programmes in Canadian cities
Cities & Health
Authors: Mogo ER, Martial L, Correa JA, Majnemer A, Shikako K
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Reliability of robotic transcranial magnetic stimulation motor mapping
J Neurophysiol
Authors: Giuffre A, Kahl CK, Zewdie E, Wrightson JG, Bourgeois A, Condliffe EG, Kirton A
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Strategies used to engage hard-to-reach populations in childhood disability research
Disability and Rehabilitation
Authors: Gonzalez M, Phoenix M, Saxena S, Cardoso R, Canac-Marquis M, Hales L, Putterman C, Shikako-Thomas K.
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CHILD-BRIGHT READYorNOT Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth
BMJ
Authors: Gorter J, Amaria K, Kovacs A, Rozenblum R, Thabane L, Galuppi B, Nguyen L, Strohm S, Mahlberg N, Via-Dufresne Ley A, Marelli A; CHILD-BRIGHT READYorNOTTM Brain-Based Disabilities Trial Study Group
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Designing User-Centered Mobile Health Initiatives to Promote Healthy Behaviors for Children With Disabilities: Development and Usability Study
JMIR Formative Research
Authors: Shikako K, Mogo E, Grand-Maison V, Simpson R, Pritchard-Wiart L, Majnemer A; Jooay App Research Group
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Protocol for a cost-utility analysis of neurostimulation and intensive camp-based therapy for children with perinatal stroke and hemiparesis based on a multicentre clinical trial
BMJ
Authors: Berrigan P, Hodge J, Kirton A, Moretti M, Ungar W, & Zwicker J
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Time to be counted: COVID-19 and intellectual and developmental disabilities-an RSC Policy Briefing
Facets
Authors: Majnemer A, McGrath P, Baumbusch J, Camden C, Fallon B, Lunsky L, Miller S, Sansone G, Stainton T, Sumarah J, Thomson D, Zwicker J
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Patient engagement in an online coaching intervention for parents of children with suspected developmental delays
Dev Med Child Neurol
Authors: Ogourtsova T, O'Donnell ME, Filliter JH, Wittmeier K, BRIGHT Coaching Group, Majnemer A
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Neonatal follow-up programs in Canada: A national survey
Paediatrics & Child Health
Albaghli F, Church P, Ballantyne M, Girardi A, Synnes A
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Safety and tolerability of transcranial magnetic and direct current stimulation in children: Prospective single center evidence from 3.5 million stimulations
Brain Stimul
Authors: Zewdie E, Ciechanski P, Kuo HC, Giuffre A, Kahl C, King R, Cole L, Godfrey H, Seeger T, Swansburg R, Damji O, Rajapakse T, Hodge J, Nelson S, Selby B, Gan L, Jadavji Z, Larson JR, MacMaster F, Yang JF, Barlow K, Gorassini M, Brunton K, Kirton A
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Clinician awareness of brain computer interfaces: A Canadian national survey
J Neuroeng Rehabil
Authors: Letourneau S, Zewdie ET, Jadavji Z, Andersen J, Burkholder LM, Kirton A
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Fatigue in children with perinatal stroke: Clinical and neurophysiological associations
Dev Med Child Neurol
Authors: Wrightson JG, Zewdie E, Kuo HC, Millet GY, Kirton A
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Outcomes and resource usage of infants born at ≤ 25 weeks gestation in Canada
Paediatr Child Health
Authors: Shafey A, Bashir RA, Shah P, Synnes A, Yang J, Kelly EN; Canadian Neonatal Network and Canadian Neonatal Follow-Up Network Investigators
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Exploring Acceptance and Commitment Therapy for parents of preterm infants
Paediatr Child Health
Authors: Esser K, Barreira L, Miller D, Church P, Major N, Cohen E, Orkin J
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Normal human and sheep fetal vessel oxygen saturations by T2 magnetic resonance imaging
J Physiol
Authors: Saini BS, Darby JRT, Portnoy S, Sun L, van Amerom J, Lock MC, Soo JY, Holman SL, Perumal SR, Kingdom JC, Sled JG, Macgowan CK, Morrison JL, Seed M.
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Current and future role of fetal cardiovascular MRI in the setting of fetal cardiac interventions
Prenat Diagn
Authors: Marini D, Xu J, Sun L, Jaeggi E, Seed M
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Understanding fetal hemodynamics using cardiovascular magnetic resonance imaging
Fetal Diagn Ther
Authors: Sun L, Marini D, Saini B, Schrauben E, Macgowan CK, Seed M
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MR imaging of the fetal heart
J Magn Reson Imaging
Authors: Marini D, van Amerom J, Saini BS, Sun L, Seed M
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Assessment of bilateral motor skills and visuospatial attention in children with perinatal stroke using a robotic object hitting task
J Neuroeng Rehabil
Authors: Hawe RL, Kuczynski AM, Kirton A, Dukelow SP
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Using a rapid review process to engage stakeholders, inform policy and set priorities for promoting physical activity and leisure participation for children with disabilities in British Columbia
Leisure/Loisir
Authors: Mogo E, Badillo I, Majnemer A, Duckworth K, Kennedy S, Symington V, Shikako-Thomas K
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Shaping research to create more social impact: Co-creating evidence with communities and decision makers can lead to research with more impact
Stanford Social Innovation Review
Authors: Mogo E, Lai J, Shikako-Thomas K
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Online peer mentorship programmes for children and adolescents with neurodevelopmental disabilities: A systematic review
Child Care Health Dev
Authors: Saxena S, Mitchell J, Ehsan A, Majnemer A, Shikako-Thomas K
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Physical literacy programs for children with disabilities: A realist review
Leisure/Loisir
Saxena S, Shikako-Thomas K
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Mirror movements in children with unilateral cerebral palsy due to perinatal stroke: Clinical correlates of plasticity reorganization
Dev Med Child Neurol
Authors: Riddell M, Kuo HC, Zewdie E, Kirton A
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Non-invasive modulation and robotic mapping of motor cortex in the developing brain
J Vis Exp
Authors: Giuffre A, Cole L, Kuo HC, Carlson HL, Grab J, Kirton A, Zewdie E
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Comparing standardized and parent-reported motor outcomes of extremely preterm infants
Children (Basel)
Authors: Morgan-Feir M, Abbott A, Synnes A, Creighton D, Pillay T, Zwicker JG, on behalf of the Canadian Neonatal Follow-Up Network
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Preterm children with suspected cerebral palsy at 19 months corrected age in the Canadian neonatal follow-up network
Early Hum Dev
Authors: Synnes A, Gillone J, Majnemer A, Lodha A, Creighton D, Moddemann D, Shah PS; Canadian and Neonatal Network; Canadian and Neonatal Follow-up Network
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Very preterm infants with technological dependence at home: Impact on resource use and family
Neonatology
Authors: Nassel D, Chartrand C, Doré-Bergeron MJ, Lefebvre F, Ballantyne M, Van Overmeire B, Luu TM; on behalf of the Canadian Neonatal Network and the Canadian Neonatal Follow-Up Network
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Early caffeine administration and neurodevelopmental outcomes in preterm infants
Pediatrics
Authors: Lodha A, Entz R, Synnes A, Creighton D, Yusuf K, Lapointe A, Yang J, Shah PS; on behalf of the investigators of the Canadian Neonatal Network (CNN) and the Canadian Neonatal Follow-up Network (CNFUN)
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Fetal Cardiac MRI: A review of technical advancements
Top Magn Reson Imaging
Authors: Roy CW, van Amerom JFP, Marini D, Seed M, Macgowan CK
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BRIGHT Coaching: A Randomized controlled trial on the effectiveness of a developmental coach system to empower families of children With emerging developmental delay
Front Pediatr
Authors: Majnemer A, O'Donnell M, Ogourtsova T, Kasaai B, Ballantyne M, Cohen E, Collet JP, Dewan T, Elsabbagh M, Hanlon-Dearman A, Filliter JH, Lach L, McElroy T, McGrath P, McKellin W, Miller A, Patel H, Rempel G, Shevell M, Wittmeier K; Parent-Panel
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Health coaching for parents of children with developmental disabilities: A systematic review
Dev Med Child Neurol
Authors: Ogourtsova T, O'Donnell M, De Souza Silva W, Majnemer A
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Extensive cardiopulmonary resuscitation of preterm neonates at birth and mortality and developmental outcomes
Resuscitation
Authors: Fischer N, Soraisham A, Shah PS, Synnes A, Rabi Y, Singhal N, Ting JY, Creighton D, Dewey D, Ballantyne M, Lodha A, Canadian Neonatal Network™ (CNN) and the Canadian Neonatal Follow-up Network (CNFUN) Canadian Neonatal Network (CNN) Site Investigators
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Maternal smoking and neurodevelopmental outcomes in infants <29 weeks gestation: A multicenter cohort study
J Perinatol
Authors: Ediger K, Hasan SU, Synnes A, Shah J, Creighton D, Isayama T, Shah PS, Lodha A; on behalf of the Canadian Neonatal Network and the Canadian Neonatal Follow-Up Network
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Outcomes after neonatal seizures in infants less than 29 weeks' gestation: A population-based cohort study
Am J Perinatol
Authors: Iwami H, Isayama T, Lodha A, Canning R, Abou Mehrem A, Lee SK, Synnes A, Shah PS; Canadian Neonatal Network and Canadian Neonatal Follow-Up Network Investigators
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Coach, care coordinator, navigator or keyworker? Review of emergent terms in childhood disability
Phys Occup Ther Pediatr
Authors: Ogourtsova T, O'Donnell M, Majnemer A
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Association between Primary Caregiver Education and Cognitive and Language Development of Preterm Neonates
J Perinatology
Authors: Asztalos EV, Church PT, Riley P, Fajardo C, Shah PS; Canadian Neonatal Network and Canadian Neonatal Follow-up Network Investigators.
View | PubMed 27571484
Books & Book Chapters
Genetics and Genomics of Cerebral Palsy. Chapter 35
In Neurodevelopmental Pediatrics: Genetic and Environmental Influences. David D. Eisenstat, Dan Goldowitz, Tim F. Oberlander, Jerome Y. Yager
Springer Nature
Authors: Friedman, Jan and Karnebeek, Clara
Modernizing the Traditional Psychologist Role: Paraprofessionals in Psychological Health Care.
Reference Module in Neuroscience and Biobehavioral Psychology
In: Asmundson, GJG & Noel, M (editors), Comprehensive Clinical Psychology (2nd Edition)
Elsevier
Authors: McGrath, P.J., Crombach, A., Preston, J.M., & Kaltenbach, E.
Fetal MRI
In: Pediatric Cardiology: Fetal, Pediatric, and Adult Congenital Heart Diseases
Springer
Authors: Marini D, Aguet J, Seed M
Pharmacological Intervention in the Fetus
In: Anderson's Pediatric Cardiology (4th Edition)
Elsevier
Authors: Mike Seed and Edgar Jaeggi (Ed. Gil Wernovsky)
Fetal cerebral consequences of structural heart disease: can these be ameliorated?
In: Fetal Therapy:Scientific Basis and Critical Appraisal of Clinical Benefits (2nd Edition)
Cambridge University Press
Authors: Mike Seed (Ed. Mark Kilby)
Pediatric Brain Stimulation (1st Edition): Mapping and Modulating the Developing Brain
Academic Press
Authors: Adam Kirton, Donald Gilbert
Plain Language Publications
Designing user-centered mHealth Initiatives to promote healthy behaviours for children with disabilities: A feasibility/pilot study of the Jooay App
Participation in leisure activities for children with disabilities | Toronto, Montreal, Calgary, Vancouver | Sharing resources using Jooay App
Original Publication | Lay Summary
Using a rapid review process to engage stakeholders, inform policy and set priorities for promoting physical activity and leisure participation for children with disabilities in British Columbia
Creating policy for children with disabilities to participate in physical activity | British Columbia
Original Publication | Lay Summary
Feasibility of High Repetition Upper Extremity Rehabilitation for Children with Unilateral Cerebral Palsy
Original Publication | Lay Summary
Reports
Prenatal opioid exposure and neonatal abstinence syndrome: a research project with 13 First Nations communities in Ontario
Toronto, ON: ICES; October 2023
Authors: Kerpan ST, Mazzucco A, Naponse-Corbiere P, Poulette C-A, Sault DK, Johnson BL, Chiu M, Deb B, Campitelli M, Rashid M, Iqbal J, Gustafson M, Walker JD, Guttmann A.
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Global Report on Developmental Delays, Disorders and Disabilities-Canada
Report submitted to the Steering Group for the UNICEF and World Health Organization Global report on developmental delays, disorders and disabilities.
Authors: Gonzalez M, Yusuf A, Steiman M, Wright N, Karpur A, Shih A, Shikako-Thomas K, Elsabbagh M
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Children with disabilities in Canada: Alternative Report for the 5th/6th Review of Canada
Authors: Shikako-Thomas K, Gonzalez M, Lai J, Movahed M, Severino S, Martens R, Finlay B, Zwicker J
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Visit Report - Special Rapporteur on the Rights of Persons with Disabilities 2019
Author: CHILD-BRIGHT KT Program
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Educational Materials
Self-Directed Certificate in POR, IS, KM, and EDI-DI
Curious to deepen your understanding of patient-oriented research (POR), implementation science (IS), knowledge mobilization (KM), and equity, diversity, inclusion, decolonization and indigenization (EDI-DI)?
Learn more about our self-directed training program that seeks to promote learning and reflection. Participants may choose which module(s) to complete and work at their own pace. You will receive a certificate of recognition for each module you complete.
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Cadre des indicateurs d’engagement en santé et des services sociaux
(In collaboration with the Unité de soutien SSA [système de santé apprenant] Québec)
View: French only
Writing Lay Articles: Recommendations
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A Plain-Language Summary Checklist
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Tip Sheet for Ethical Youth Engagement: For researchers partnering with youth with neurodevelopmental disabilities
Authors: Sakiko Yamaguchi, Linda Nguyen, Mathias Castaldo, Shafniya Kanagaratnam, Genevieve Sutherns, Keiko Shikako
View: English | French
2021 LEARNING SERIES: Diversity, Accessibility, & Accommodation Considerations in Patient-Oriented Research with Youth
View Webinar
Learning from Youth and Young Adults: Engagement Strategies for Patient-Oriented Research Projects, Committees, and Councils
View Webinar
National Youth Advisory Panel Publishes Tips for Researchers
View Webpage
NYAP & SibYAC’s 10 Tips for Researchers
View Webpage
NYAP Consultation Service
View Infographic
Tips for Patient-Partners Engaged in Patient-Oriented Research
View Infographic
Tips for Researchers Working with Patient-Partners
View Infographic
Patient engagement in a national research network: barriers, facilitators, and impacts
Original Publication | Lay Summary
Knowledge Mobilization (KM) Strategies for Policymaking
Let’s Talk KM Info Session (recording)
Evidence-informed Knowledge Mobilization Methods for Patients, Parents, and the Public
View (by KM Strategy) | View (by Intended Outcome) | Let’s Talk KM Info Session (recording)
Evidence-informed Knowledge Translation Methods for Healthcare Professionals
View (by intended Outcome)
Knowledge Translation Activity Formulation and Tracking Tool
View Tracking Tool
IS and KM Videos for Youth by Youth
Infographics
The Transition from NICU to Home
Authors: Julia Orkin, Eyal Cohen, Nathalie Major, Paige Church, Natasha Bruno, Kayla Esser, Nichelle Benny Gerard, Mehwish Rana, Angie Lim, Megan Liang, Brenda Blais, Kate Robson, Fabiana Bacchini, Amanda Mayer, Alyssa Keel, Julie Rose, Joe-Anne Brisson, Julia Shea, and Karine Canuel
View: English | French
Cultural Safety, Sensitivity, and Humility in Action
Authors: Tinu Akinwande, Marlyn Bennett
View: English | French | Word (accessible - ENG only)
Exploring Indigenous Health and Well-Being
Authors: Tinu Akinwande, Marlyn Bennett
View: English | French | Word (accessible - ENG only)
Honouring Progress: Key Milestones in Indigenous Health
Authors: Tinu Akinwande, Marlyn Bennett
View: English | French | Word (accessible - ENG only)
Contributing to Research Papers as a CHILD-BRIGHT Partner with Lived and Living Experience
Author: CHILD-BRIGHT Network Engagement Program
View: English | French
Neonatal Follow-up Resources
Authors: CPBF and CNFUN
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Navigating the Road to Research
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
The POWER of Plain Language Writing
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Authorship and Acknowledgment Tips
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Social Media Benefits and Challenges
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Strategies to Communicate with Policymakers
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Children with brain-based developmental disabilities and the COVID-19 pandemic
Authors: CHILD-BRIGHT KT Program
Distributed via: CHILD-BRIGHT Network website
View in English | View in French
Engaging hard-to-reach populations in childhood disability research
Author: Miriam Gonzalez; Designed by Cat Lau
Distributed via: CHILD-BRIGHT Network website
View in English
CHILD-BRIGHT Members Share COVID-19 Concerns with Federal Disability Advisory Group Representative
Authors: CHILD-BRIGHT KT Program & Parent Partners
Distributed via: CHILD-BRIGHT Network website
View in English | View in French
Four strategies to disseminate your research results
Authors: A. Zerbo & R. Cardoso
Distributed via: CHILD-BRIGHT Network website
View in English | View in French
Fact Sheet - The Rights of Children with Disabilities in Canada: Call to Action
Authors: Kabisha Velauthapillai, Miriam Gonzalez, and Keiko Shikako
Distributed via: CHILD-BRIGHT Network website
View in English
How Can Parents and Youth Engage in the Human Rights Conventions Reporting & Monitoring?
Authors: CHILD-BRIGHT KT Program
Distributed via: CHILD-BRIGHT Network website
View in English | View in French
Patient-Partner Roles in the Research Process
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Patients as Subjects vs. Patients as Partners
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
How is POR demonstrated in research?
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
IAP2 - Levels of Participation
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
CB - Levels of Participation
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Barriers and Drivers to POR
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Tips for Researchers Conducting POR
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Tips for Patient-Partners Participating in POR
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Key Competencies for POR
Authors: CHILD-BRIGHT Training Program
Distributed via: CHILD-BRIGHT Network website
View in English
Webinars
CHILD-BRIGHT Network Programs
The CHILD-BRIGHT Network Knowledge Mobilization Program
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The CHILD-BRIGHT Network Implementation Science Research Program
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The CHILD-BRIGHT Network Engagement Program
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The CHILD-BRIGHT Network Equity, Diversity, Inclusion, Decolonization & Indigenization (EDI-DI) Program
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The CHILD-BRIGHT Network Training & Capacity Building Program
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CHILD-BRIGHT Network Research Projects
Safety and Feasibility of Continuous Maternal Supplemental Oxygen in Fetuses with Single Ventricles: Preliminary Findings
Presenter: K Lee
Authors: Fu-Tsuen (Kelvin) Lee, Liqun Sun, Joshua van Amerom, Adrienn Szabo, Natasha Milligan, Amandeep Saini, Alan Cooper, Lindsay Freud, Edgar Jaeggi, Tim Van Mieghem, John Kingdom, Steven Miller, Mike Seed
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A Re-Design of Metformin for Motor & Cognitive Improvement in Children with Cerebral Palsy: A Feasibility Study
Presenters: Cadogan Loftsgard K, Geboers J, de Medeiros C, Switzer L
Authors: Fehlings D, Mabbott D, Cadogan Loftsgard K, de Medeiros C, Geboers J, Switzer L
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Stimulation for Perinatal Stroke: Optimizing Recovery Trajectories The SPORT trial
Authors: Hilderley A, Dunbar M, Andersen J, Fehlings D, Metzler M, Carlson H, Zewdie E, Hodge J, Floer A, O'Grady K, Carsolio L, Dlamini N, Giuffre A, Cole L, Kuo HC, Bourgeois A, Hollis A, Maiani M, Ciechanski P, Jadavji Z, Craig B, Kelly D, Keough J, Wrightson J, Fay L, Switzer L, Batara J, Yaskina M, Hill MD, Kirton A
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Interplay
Presenters: Sandra Reist, Mia Herrero, Liz Cambridge, Eleanor Leverington, Divya Vurrabindi, Alicia Hilderley
Authors: Hilderley A, Vurrabindi D, Cassidy C, Chai J, McCoy S, Reist S, Tao C, Tao S, Cambridge L, Herrero M, O’Grady K, Leverington E, Micek V, Andersen J, Fehlings D, Kirton A
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Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairment: Phase I
Presenter: Edlyn Lim
Authors: Edlyn Lim, Hal Siden, Tammie Dewan, Vithya Gnanakumar, Julia Orkin, Anamaria Richardson, Christina Vadeboncoeur, Liisa Holsti, Tim Oberlander, Gail Andrews
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Pain and Symptoms in Children with Neurological Impairment: The Background of PIUO Phase 2
Presenters: Michael Potts, Harold Siden, Susan Cadell, Betty Davies, Rose Steele, Gail Andrews
Authors: Michael Potts, Gail Andrews
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Strongest Families™ Neurodevelopmental Project Update: The Power of Partnership
Presenter: Karen McEwan
Authors: Elisa Kaltenbach, Lucyna Lach, Jeanine Lebsack, Karen McEwan, Patrick McGrath, Donna Thomson, Ting Xiong
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Jooay App; Promoting Participation in Leisure for Children and Youth with Disabilities
Presenters: Keiko Shikako, Mehrnoosh Movahed
Authors: Mehrnoosh Movahed, Ebrahim Mahmoudi Kojidi, Annette Majnemer, Carlos Denner, Stephanie Glegg, Tiiu Poldma, Janet McCabe, Michelle McClure, Dave Sora, Rachel Martens, Lesley Wiart, Jess Silver, Melanie Bergthorson, Nick Katalifos, Joanne Charron, Marla Cable, Gillian Backlin, Keiko Shikako
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Cognitive Rehabilitation (MegaTeam) and its Effects on Emotional and Behavioural Regulation in ADHD and Autistic Children: A Randomized Controlled Trial
Authors: Cheung TCK, Dhaliwal N, Arshad T, Anagnostou E, Ameis S, Sananes R, Bedard AC, Crosbie, J
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Coached, Coordinated, Enhanced Neonatal Transition (CCENT)
Authors: Natasha Bruno, Kayla Esser, Blossom Dharmaraj, Noah Zweig, Eyal Cohen, Nathalie Major, Paige Church, Emily Kieran, Anne Synnes, EstherLee, Hema Patel, Elise Couture, Karel O’Brien, Linh Ly, Thierry Daboval, Kate Robson, Fabiana Bacchini, Julie Rose, Julia Orkin
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CHILD-BRIGHT Coaching: Moving Toward Implementation of a Virtual Coaching Program for Caregivers of Young Children with Suspected Developmental Delays
Authors: Annette Majnemer, Kristy Wittmeier, André Bussières, Jillian Filliter, Maureen O’Donnell, Carrie Costello, BRIGHT Coaching Co-Investigators, and BRIGHT Coaching Parent Advisory Group
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The Evolution of our Partnership with Youth and Families on the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Project: Key Reflections and Lessons Learned
Authors: Linda Nguyen, Kinga Pozniak, Sonya Strohm, Claire Dawe-McCord, Jessica Havens, Donna Thomson, Connie Putterman, Dana Arafeh, Barb Galuppi, Alicia Via-Dufresne Ley, Shelley Doucet, Khush Amaria, Adrienne Kovacs, Ariane Marelli, Ronen Rozenblum & Jan Willem Gorter on behalf of the READYorNot™ Brain-Based Disabilities Project
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IMAGINE Study: A Single Gene Disorder is Identified in Half of Children with Complex Presentations that Include Cerebral Palsy
Authors: Colleen Guimond, Patricia Birch, Madeline Couse, Isabel Jordan, Brenda Lenahan, Anna Lehman, Jill Mwenifumbo, Kelsey Ohs, Clara van Karnebeek, Jan Friedman
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Identifying Social Economic Inequities amongst the Pediatric Disabilities Population: Leveraging Hospital Based Funding Programs
Presenters: Addy Budin, Cheryl Peters
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The Relationship between National Child Health Research Funding and Pediatric Health Outcomes in Canada
Authors: Analyssa Cardenas, Christine Chambers, Sarah De La Rue, Jennifer Parker, Noni MacDonald, Ruth Warre, Isabel Jordan, Jessica Savoie, Brittany Cormier, Alexandria Martin, Malvina Chhina
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Co-Development of the Family Engagement in Research Leadership Academy: An Advanced Training Opportunity to Support Emerging Leaders in Child Health Research
Authors: Micsinszki S, Thomson D, Putterman C, Martens R, Soper AK, McCauley D, Phoenix M, Gorter JW, Cross A
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The Impact of COVID-19 on Recruitment for a Pediatric Network Study
Presenters: Isobel Fishman, Suzanne Henderson
Authors: Isobel Fishman, Suzanne Henderson, Christina Vadeboncoeur
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Navigating Virtual Care During COVID-19: Perspectives of Parents of Children with Medical Complexity
Presenter: Vanessa C. Fong
Authors: Vanessa Fong , Jennifer Baumbusch, Koushambhi Khan
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Passerelle: A National Hub in Capacity Development for Patient-oriented Research
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Knowledge Translation Strategies to Promote Evidence-based Rehabilitation for Children with Cerebral Palsy: A Scoping Review
Presenter: Jessica Hanson
Authors: Jessica Hanson, Akash Sasitharan, Tatiana Ogourtsova, Annette Majnemer
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POR in Practice: Creating a Journal Club for Parents of Medically Complex Children
Authors: Anne-Mette Hermansen, Laesa Kim
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Home-based Early Intensive Hemiparesis Therapy: Engaging Nurture
Authors: Hilderley A, Herrero M, O’Grady K, Leverington E, Micek V, Diot C, Reist S, Pynn R, Tao C, Tao S, Andersen J, Kirton A
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Early Impact of Robotic Gait Training in Children with Neurological Disorder - A Case Study
Presenter: Kiran Isapure
Authors: Kiran Isapure, Jina Seok, Benjamin Norman, Elizabeth G. Condliffe
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Exploring the Impacts of COVID-19 Public Health Measures on Children with Complex Care Needs and their Families in the Maritimes
Authors: Catie Johnson, Jennifer Lane, Julie Clegg, Holly McCulloch, Ijeoma Staunton, Mwalu Peeters, Janet Curran
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Coping with the COVID-19 Pandemic in Canada: Barriers and Facilitators as Reported by Caregivers of Youth with Developmental Delays and Disabilities
Presenter: Anna Katalifos
Authors: Anna Katalifos, Afiqah Yusuf, Sakiko Yamaguchi, Nicola Wright, Mandy Steiman, Miriam Gonzalez, Andy Shih, Keiko Shikako, Mayada Elsabbagh
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Exploring What Motivates Parents of Children Living with Medical Complexity to Participate in Research Studies: An Interpretive Phenomenology Study
Presenter: Laesa Kim
Authors: Laesa Kim, Hal Siden, Karen Cook, Anne-Mette Hermansen
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A Scoping Review on the Use of Gamification in Mobile Applications for Children with Disabilities: Trends and Future Directions
Presenter: Ebrahim Mahmoudi
Authors: Ebrahim Mahmoudi, Paul Yoo, Ananya Chandra, Roberta Cardoso, Carlos Denner, Annette Majnemer, Keiko Shikako, the Jooay Research Team
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Demands and Resources in Family and Work Domains: Exploring Well-being of Employed and Non-employed Parents of Children with Neurodevelopmental Disabilities
Presenter: Karen McEwan
Authors: Karen Turner, Arla Day, Patrick McGrath
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“We Are Made of Tough Stuff”: Identifying the Service Needs and Priorities of Newcomer Families of Autistic Children
Presenter: Janet McLaughlin
Authors: Janet McLaughlin, Vanessa Fong, Margaret Schneider
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Leadership Competencies in Family Engagement in Research
Authors: Micsinszki S, Thomson D, Putterman C, Martens R, Soper AK, McCauley D, Phoenix M, Forster VJ, Gorter JW, Cross A
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Feasibility and Acceptability of a Virtual Reality Intervention for Children and Youth with Neurodevelopmental Disorders: Results from a Pilot Study
Authors: Mora D, Cheung TCK, Dhaliwal N, Bedard AC, Schachar R, Crosbie, J
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Moving Forward: Mobilizing Knowledge to Co-Develop the Siblings Training, Empowerment, and Advocacy Kit (Siblings TEAKit) to Support Siblings of Individuals with a Disability
Authors: Linda Nguyen, Samantha Bellefeuille, Hanae Davis, Jan Willem Gorter, Marjolijn Ketelaar, Jennifer Zwicker, Keiko Shikako
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Co-designing Solutions to Enhance Families’ Experiences with Telerehabilitation – Findings and Reflections
Presenters: Meaghan Reitzel, Cynthia Lennon
Authors: Meaghan Reitzel, Monika Novak Pavlic, Jennifer Lasenby-Lessard, Chantal Camden, Briano Di Rezze, Lori Letts, Cynthia Lennon, Brendan Wylie-Toal, Michelle Phoenix
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A Cost Effectiveness Analysis of Mega Team for Cognitive Rehabilitation in ADHD
Authors: Roaa Shoukry, Jennifer Crosbie, Taha Arshad, Navi Dhaliwal, Evdokia Anagnostou, Stephanie Ameis, Renée Sananes, Anne-Claude Bedard, Jennifer Zwicker, Myla Moretti, Wendy Ungar
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Vocational Needs of Chinese Autistic Youth and Young adults in Ontario: A Preliminary Qualitative Study
Authors: Jeremiah So, Hei Lam Cheng, Ashtyn Chau, Huberta Chan, Hogan Lam, Jackie Seto, Hayden Wong, Yvonne Leung, Anna Victoria Wong, Theodore C.K. Cheung
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Cost Effectiveness Analysis of the Strongest Families Neurodevelopmental Program
Presenter: Aranie Vijayaratnam
Authors: Aranie Vijayaratnam, Myla Moretti, Jennifer Zwicker, Karen McEwan, Lucy Lach, Patrick McGrath, Wendy J. Ungar
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Correlates of Mental Health Problems among Parents of Children with Neurodevelopmental Disabilities: A Systematic Review and Meta-analysis
Presenter: Sydney Walker
Authors: Walker S, McEwan K, Agyare A, Xiong T, McGrath P
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Our Journey, Our Stories
Authors: Hayley Wroot , Diana Salcedo, Aaron Ooi , Anamaria Richardson
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Progress and Goals for the Critical, Ethical Engagement with Youth (CEE YOU)! Project
Authors: Sakiko Yamaguchi, Mathias Castaldo, Shafniya Kanagaratnam, Linda Nguyen, Keiko Shikako
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Characteristics and Processes to Develop Lay Summaries of Healthcare Evidence: A Scoping Review and Consultation Exercise
Authors: Sareh Zarshenas, JoAnne Mosel, Hardeep Singh, Adora Chui, Samantha Seaton, Sandra Moroz, Tayaba Khan, Sherrie Logan, Heather Colquhoun
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Other
CHILD-BRIGHT Network Bridging the Gap project
A CHILD-BRIGHT study of the adoption and scaling up of psychosocial interventions for children & youth with neurodevelopmental disabilities and their carers.
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Diagnosis of CP—Family Perspective and Critical Messaging
Date: February 2023
Presenter: Dr. Paige Church and Brenda Agnew (Parent and Family Advocate)
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School Readiness Among Children Born Preterm
Date: December 2022
Presenter: Dr. Deepak Louis
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Advances in Early Screening and Treatment of Autism and Related Conditions: Potential application to infants born prematurely
Date: October 2022
Presenter: Dr. Jessica Brian
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The Hammersmith Infant Neurological Examination (HINE): A Powerful Tool for Neonatal Follow-up Programs!
Date: May 2022
Presenter: Dr. Darcy Fehlings
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2020 CHILD-BRIGHT Policy Forum
Date: November 20, 2020
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Celebrating the United Nations Convention on the Rights of Persons with Disabilities Anniversary
Date: January 21, 2022
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KT Policy Dialogue
Date: February 17, 2022
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CommuniKIDS: Co-development and dissemination of a tool for communicating trial results in child health research
Poster with Oral Presentation
Authors: Butcher N, Baba A, Tay J, Pallone N, Richards D, Smith M, Vanderhout S, Offringa M, Potter B.
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Play
December 2023
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Creating Inclusive Communities for Children with Disabilities
September 2023
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Early Detection and Intervention Toolkit for Children with Cerebral Palsy (EDIT-CP): A National Knowledge Implementation Project
July 2023
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The Jooay App: Promoting Participation in Leisure
May 2023
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COACHING in Childhood Disability
April 2023
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Ensuring the Mental Health of Children 5-12 years Old Before and After the COVID-19 Pandemic
December 2020
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PREP© Intervention: Improving the Participation of Children and Youth with Disabilities
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Being Active with Juvenile Arthritis!
November 2018
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Congenital Heart Disease: What Do We Know Today?
July 2018
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Prematurity: Impacts for Children and Families
June 2018
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Current State of Stem Cell Treatments for Cerebral Palsy: A Guide for Patients, Families and Service Providers
May 2018
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Heads Up : Kids and Concussions
March 2018
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A Good Night’s Sleep for Children with Disabilities
May 2017
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Helping Children with Autism Reach Their Full Potential, Where Are We At?
April 2017
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CIMT and the Power of HABIT
September 2016
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Getting Active: What Does it Mean for Children With Down Syndrome?
September 2016
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A Cause for Cerebral Palsy: Could it Be in Our Genes?
June 2016
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Standardizing Chronic Pain Assessment: Using a Toolbox in a Pediatric Rehabilitation Setting
Winter 2014
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Magnesium Pulphate Protects Infants from Cerebral Palsy
Spring 2013
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Growing Up with Cerebral Palsy: Planning Transition into Adulthood
Fall 2012
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Cerebral Palsy: Strong Bones, Healthy Kids
Summer 2012
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Non-Invasive Brain Stimulation in Cerebral Palsy
Winter 2012
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“If I Knew Then What I Know Now”: Parents’ Reflections On Raising A Child With Cerebral Palsy
Winter 2012
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Virtual Reality: Rehabilitation Applications in Children with Disabilities
Summer 2011
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HOT TOPIC: Caring for Caregivers
Spring 2008
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HOT TOPIC: Not So Specific Language Impairment
Winter 2008
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