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keywords
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Neurodevelopment, child disability, prematurity, cerebral palsy, intellectual disability ,enablement
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overview
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For 34 years, I have been involved with understanding the complexity of child, adolescent, and adult neurodevelopmental disability and community outcomes of health, functioning, and participation. I bring expertise in qualitative and quantitative methods for modelling health status, resiliency and missed opportunities across childhood, adolescent and young adult life for individuals born prematurely. I have trained 54 postdoctoral fellows in their use of developmental and functional assessments, biomarkers, and clinical outcomes research, of which 95% have gone on to successful scientific and clinical-academic medical leadership positions.
Throughout my career, I have asked the question how do individuals with prematurity at highest risk for early onset neurodevelopmental disabilities fare with respect to their long-term physical, developmental and social health outcomes? In my first U.S. academic job, I was responsible for neurodevelopmental consultative services linked to primary medical care and community care coordination (UCP, ARC, People’s Inc.) for individuals age birth to 90 years with CP and related neurodevelopmental disabilities. For these efforts, I received the Sir James Carreras International Variety Club Award.
In my academic positions at Brown University and University of Chicago, I have continued to develop interdisciplinary regional management teams to promote functioning and participation for individuals with neurodevelopmental disabilities. With interdisciplinary colleagues, I developed a pediatric functional independence measure (WeeFIMTM) that has been used for 3-7 year outcomes in three NIH Multicenter Studies: Cryosurgery for Retinopathy of Prematurity (Pediatrics. 2000;106(5):998-1005. PMID: 11061766), Fetal Surgery for Myelomeningocele (Childs Nerv Syst. 2011 Jul;27(7):1083-8. PMID:21327591), and the CoolCap trial of cooling for neonatal encephalopathy (Guillet et al. Pediatr Res. 2012 Feb;71(2):205-9. PMID:22258133). More recently, I developed the Warner Initial Development Evaluation of Adaptive and Functional Skills (WIDEA-FS), which tracks emerging motor, communicative, and adaptive competencies in the first two years, and the Child Health Impairment-Functioning, Participation, and Participation (CHI-FPS) Checklist for children 7-18 years. These instruments were respectively normed on over 1500 neurotypical children and over 1500 children with disabilities. These tools were validated against specific standardized motor, communicative, developmental, psychological, and educational achievement tests. These indicators of challenges in daily activities and their impact on family life were subsequently implemented in community populations in New England, the International Rett Registry, the Western Australia Down Syndrome Registry, the U.S. and Australian Newborn Encephalopathy-Hypothermia and Erythropoietin Trials, and the Cerebral Palsy Research Registry. In all of these efforts, longitudinal strategies for tracking physical developmental and behavioral health outcomes, as well as functioning, participation and individual and family well-being occurred through interdisciplinary teams of health and rehabilitation professionals committed to enablement.
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