Overview

Developmental Trajectories of Children with CP

Ontrack logo

The On Track Study is a large multi-site collaboration involving researchers, therapists, families, and children with cerebral palsy (CP) from across Canada and the United States. The aim of the CIHR funded study is to describe the changes in balance (a primary impairment), range of motion limitations, strength, and endurance (secondary impairments), number and impact of health conditions, and participation in self-care, recreation, and leisure activities over a one-year period in young children with CP aged 18 months through 11 years. We aim to recruit 175 children with CP, aged 18 months to 10 years, in each of the 5 levels of the Gross Motor Function Classification System (GMFCS) for a total sample of 875 families. The On Track Study will recruit some families involved in our previous Move & PLAY study, as well as welcoming some new children and their families to the project. Trained therapist assessors will measure the primary and secondary impairments (i.e. balance, range of motion limitations, and strength) on 2 occasions (12-months apart). Parents will complete questionnaires to track changes in the child's endurance, health conditions, and participation in self-care and recreation activities, at the same data collection points. We will use these 2 data collection points to develop reference percentiles and we will present the data so that therapists can assist families to determine if children with CP are developing as expected, better than expected, or more poorly than expected, depending on their functional ability levels.

In 2013, our team was awarded additional funding (PCORI) to complement the original On Track Study by increasing data collection in a subsample of 600 children with cerebral palsy across all 5 GMFCS levels. Rather than having two observations across one year, this subsample will have five observations (6-months apart) across two years. With these data the first additional study aim is to create longitudinal developmental curves for impairments, health conditions, and participation variables by estimating the average pattern of change, important individual variations in the pattern of change between children, and the degree of consistency over time within children. Establishment of longitudinal developmental curves will provide easily understood and useful tools for families and service providers to discuss questions about how well their children are doing in relationship to other children with CP of similar functional ability levels. The second study aim is to utilize service data collected from parents and children's progress on the longitudinal developmental curves to develop recommendations for rehabilitation service provision for children with CP across functional ability levels. Having this information should assist with collaborative decision-making among family members and service providers that efficiently utilizes rehabilitation services to meet families' goals. To date this information does not exist, rather, many different types and intensities of services are recommended based primarily on convention, clinicians' past experiences, and education rather than on evidence of children's potentials to achieve goals. An additional sub-study under the PCORI funding is to collect direct physical activity measurements from a sub-set of the children in the larger study. These data will be examined in relationship to other measures of endurance and participation.

Recruitment

Double-click the interactive map below to zoom-in on our recruitment sites

724 families were enrolled in the On Track Study

656 families completed the 2-visit study (2 visits across one year)

424 families completed the 5-visit study (5 visits, every 6 months from study entry)

Funder

CIHR (Canadian Institutes of Health Research Operating Grant MOP #119276) 2012 - 2017

PCORI (Patient-Centered Outcomes Research Institute Contract #5321) 2013 - 2016

Promotional Brochures

2-visit study brochure (English, French)

5-visit study brochure (English, French, Spanish)


Newsletters

On Track Study Family Newsletter, First Edition, March 2014 (English) (Spanish)

On Track Study Family Newsletter, Second Edition, September 2014 (English) (Spanish)

On Track Study Family Newsletter, Third Edition, June 2015 (English) (Spanish)

On Track Study Family Newsletter, Fourth Edition, May 2016 (English) (Spanish)

On Track Study Family Newsletter, Fifth Edition, January 2017 (English) (Spanish)