2024
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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2023
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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2022
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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2021
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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2020
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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2019
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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2017
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.
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