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.
Johns Hopkins University
Baltimore MD
- Neurodevelopment, behavior, genetics
1985
Brown University
Providence RI
- Pediatric Residency
1982
Northwestern University
Chicago Illinois
MD - Medicine
1979
Northwestern University
Evanston Illinois
BA - Mathematics
1973
Cerebral Palsy and Motor Impairment after Extreme Prematurity: Prediction of Diagnoses at Ages 2 and 10 Years.
Cerebral Palsy and Motor Impairment after Extreme Prematurity: Prediction of Diagnoses at Ages 2 and 10 Years. J Pediatr. 2024 Apr 03; 114037.
PMID: 38580191
Social determinants of health rather than race impact health-related quality of life in 10-year-old children born extremely preterm.
Social determinants of health rather than race impact health-related quality of life in 10-year-old children born extremely preterm. Front Pediatr. 2024; 12:1359270.
PMID: 38550629
Understanding the multidimensional neurodevelopmental outcomes in children after congenital Zika virus exposure.
Understanding the multidimensional neurodevelopmental outcomes in children after congenital Zika virus exposure. Pediatr Res. 2024 Mar 04.
PMID: 38438554
Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators.
Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators. Pediatr Pulmonol. 2024 Mar 01.
PMID: 38426806
Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.
Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry. Disabil Health J. 2024 Feb 29; 101593.
PMID: 38433033
Assessing Neonatal Intensive Care Unit (NICU) Graduates Across Varied Settings: A Study on the Feasibility of the Baby Moves App.
Assessing Neonatal Intensive Care Unit (NICU) Graduates Across Varied Settings: A Study on the Feasibility of the Baby Moves App. J Pediatr. 2024 Feb 22; 269:113979.
PMID: 38387754
Neurodevelopmental Outcomes of Normocephalic Colombian Children with Antenatal Zika Virus Exposure at School Entry.
Neurodevelopmental Outcomes of Normocephalic Colombian Children with Antenatal Zika Virus Exposure at School Entry. Pathogens. 2024 Feb 13; 13(2).
PMID: 38392908
Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope.
Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope. Children (Basel). 2024 Jan 26; 11(2).
PMID: 38397277
Ensuring Optimal Outcomes for Preterm Infants after NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up.
Ensuring Optimal Outcomes for Preterm Infants after NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up. Children (Basel). 2024 Jan 24; 11(2).
PMID: 38397258
Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.
Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry. Disabil Health J. 2023 Nov 13; 101546.
PMID: 37993325
American Academy of Cerebral Palsy and Developmental Medicine(AACPDM) Mentor Award
2016
March of Dimes Jonas Salk Health Leadership Award for Research
2013
Pathways Pioneer Award for Leadership in Care of children with neuromotor delays
2012
AACPDM Gayle Arnold Award for Best Scientific Paper with Athena Patrianarchos
2008
Rhode Island Health Certificate of Recognition for Children with Special Health Care Needs
2003
Best Doctors in America 2001
2001 - 2019
RI Human Services Feather Award for care coordination for individuals with disabilities
2001
American Academy of Physiatry Excellence in Research Writing Award with K Ottenbacher
2000
Rhode Island Governor’s Award, Early Intervention Coordinating Committee
2000
International Variety Club Award forPhysician Leadership in Neurodevelopmental Disabilities
1995
Developmental Disabilities Planning Council of Western NY Community Service Award for health equity
1993
Down Syndrome Parent Group of Western NY Community Service Award for Medical care and advocacy
1992
AACPDM United Cerebral Palsy Award for Best Best Scientific Poster
1991
AACPDM Sage Award for Best Audiovisual Presentation with K. DiGaudio and J. Schwiergerling
1990
Johns Hopkins Young Investigator Day: Postgraduate Fellowship Certificate of Merit for Research
1985