Jan Willem Gorter, MD, PhD, FRCP(C) is the Director of the CanChild Centre for Childhood Disability Research, Professor in the Department of Pediatrics, and an associate member in the School of Rehabilitation Science at McMaster University. He is the Scotiabank Chair in Child Health Research.
Jan Willem has training in rehabilitation medicine (physiatry) with a special clinical and research interest in transition services for youth with developmental disabilities. He completed his post doctoral training at CanChild in 2002 and was co-founder of NetChild Network for Childhood Disability Research in the Netherlands in 2003.
Jan Willem's research focuses on the themes of family, function and fitness and includes clinical studies and health services research. Jan Willem currently leads the Stay-FIT program which studies the effects of a physical activity and active lifestyle intervention for youth with cerebral palsy (CP).
He is also leading a program of research on youth with disabilities which includes the TRACE study on healthcare transition, and the MyStory project on the health and wellbeing of adolescents and adults with cerebral palsy.
Jan Willem’s vision is to enhance the physical health, mental health and well-being of children and youth with disabilities/chronic health conditions and their families through interventions carefully tailored, timed and integrated into health services. He leads an internationally recognized research program that advances the knowledge of health development of people with disabilities, and that enhances research capacity in 'Lifecourse Health Development' through mentoring and training.
Jan Willem's research is frequently published in peer-reviewed publications in leading journals. A comprehensive list of publications is available on PubMed and Google Scholar.
- New Approaches to Transition
Jan Willem's research has identified critical gaps in the understanding of how to enhance health and well-being of young disabled people and caregivers. His research team has made recommendations to identify new approaches to prevent physical and mental health consequences, foster societal participation, and promote seamless transition from child to adult health systems for youth with disabilities - developments that will also benefit young people with other chronic conditions.
His team has developed, validated, and licensed the TRANSITION-Q, a novel self-management meausre for adolescents with chronic conditions, ages 12-18. The tool is now being used across Ontario, including six pediatric academic health centres. This discovery addresses a need for developmentally appropriate tools to assess child and family readiness for transition.
- Evidence-based Service Redesign
Through an environmental scan, Jan Willem's team determined that in Ontario there are 28 transition programs predominantly with condition- or centre-specific focus; the majority of which are not evaluated or evidence-based. There is a consistent use of 'home-grown' measurement tools that may not be psychometrically sound or allow for comparison across sites. Through this discovery, his team now has the foundation and research network to be an incubator for evidence-informed service redesign of transition care.
Knowledge Translation and Community Engagement
Jan Willem discusses how to prepare patients and their families to "graduate" from pediatrics to adult care and plan for the future. (Photo: Jan Willem and his patient Nour, discussing transition care)
Jan Willem's presentation at the CP-NET Science & Family Day, "Growing Up with CP - Voices from the MyStory Project.
Jan Willem was interviewed by The Globe and Mail about new research into genetics and cerebral palsy. Read the article: Cerebral palsy may have genetic causes, Canadian study suggests (August 3, 2015).
|| Selected for the annual Chambers Family Lifespan Lecture - Fit for Life (Thursday, October 22, 2015, Austin, Texas) by the American Academy for Cerebral palsy and Developmental medicine (AACPDM).
(Watch the video of Jan Willem's talk: begins at 32.10)
||Selected for the annual Harry Medovy Lecture (May 2013) by the Department of Pediatrics and Child Health at the University of Manitoba