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
The HYdrocortisone for Bronchopulmonary Dysplasia Respiratory and Developmental (HYBRiD) outcomes study: protocol for a longitudinal cohort study.
The HYdrocortisone for Bronchopulmonary Dysplasia Respiratory and Developmental (HYBRiD) outcomes study: protocol for a longitudinal cohort study. BMC Pediatr. 2024 Nov 14; 24(1):737.
PMID: 39543521
Reimagining Neonatal Follow-Up: An Equitable Model of Care Emphasizing Family and Child Function.
Reimagining Neonatal Follow-Up: An Equitable Model of Care Emphasizing Family and Child Function. Pediatr Clin North Am. 2025 02; 72(1):93-109.
PMID: 39603729
Neurodevelopmental Outcomes of Preschoolers with Antenatal Zika Virus Exposure Born in the United States.
Neurodevelopmental Outcomes of Preschoolers with Antenatal Zika Virus Exposure Born in the United States. Pathogens. 2024 Jun 27; 13(7).
PMID: 39057769
Social Determinants in COVID-19 Experiences of Children With Disabilities Receiving School-Based Services in Chicago: Mixed-Methods Study of Parent/Guardian Perspectives.
Social Determinants in COVID-19 Experiences of Children With Disabilities Receiving School-Based Services in Chicago: Mixed-Methods Study of Parent/Guardian Perspectives. J Dev Behav Pediatr. 2024 Sep-Oct 01; 45(5):e483-e491.
PMID: 39413306
Social Determinants in COVID-19 Experiences of Children With Disabilities Receiving School-Based Services in Chicago: Mixed-Methods Study of Parent/Guardian Perspectives.
Social Determinants in COVID-19 Experiences of Children With Disabilities Receiving School-Based Services in Chicago: Mixed-Methods Study of Parent/Guardian Perspectives. J Dev Behav Pediatr. 2024 Jun 21.
PMID: 38905221
Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions.
Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions. Disabil Health J. 2024 Jul; 17(3):101625.
PMID: 38839558
Health-related quality of life at age 10 years in children born extremely preterm.
Health-related quality of life at age 10 years in children born extremely preterm. J Perinatol. 2024 Jun; 44(6):835-843.
PMID: 38760579
Retinopathy of prematurity and neurodevelopmental outcome and quality of life at 10 years of age.
Retinopathy of prematurity and neurodevelopmental outcome and quality of life at 10 years of age. Res Sq. 2024 May 08.
PMID: 38766141
Optimizing trajectories of social adaptive competencies after extreme prematurity during the first 1000 days.
Optimizing trajectories of social adaptive competencies after extreme prematurity during the first 1000 days. Semin Fetal Neonatal Med. 2024 Feb; 29(1):101531.
PMID: 38632009
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 Aug; 271:114037.
PMID: 38580191
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