On Track: Monitoring Development of Children With Cerebral Palsy or Gross Motor Delay
Condition: Cerebral Palsy
MeSH terms: Paralysis; Cerebral Palsy
Study type: Observational

Summary: 
      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
      researchers need to better understand how young children who have difficulties with movement
      activities progress and develop in their balance abilities, fitness, strength, health, range
      of motion, self-care, everyday play, and activity participation.

      This study will determine how young children with cerebral palsy or gross motor delays
      progress in many aspects of their physical development and participation in daily life. The
      information collected from this study will help therapists and parents monitor if a child is
      developing as expected in his or her physical development and participation. Then, the health
      care professionals working with children can use the results of this study, in combination
      with the previously completed Move & PLAY study results, to provide the services that are
      most beneficial and meaningful for each child and their family members.
    

Detailed description: 
      Trained therapist assessors will measure the primary and secondary impairments (i.e.,
      balance, range of motion limitations, and strength) on 5 occasions (6-months apart over 2
      years). 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. The researchers will use these 5 data collection points to develop
      reference percentiles and 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.

      The researchers will 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 researchers will then 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.

      An additional sub-study 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.
    

Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Children with cerebral palsy or gross motor delay and CP motor symptoms, ages 18 month to
        12 years, and their parents.
      
Keywords: Cerebral palsy; Gross motor delay