On Track

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Developmental Trajectories of Children with CP


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.



Checking Up and Checking In: Partnering with Families of Children with Cerebral Palsy
​A video inspired by parent members of the On Track study team and funded by PCORI. 

Creating the Future: Engaging Children with Cerebral Palsy in the Circle of Care
​A video inspired by parent members of the On Track study team and funded by PCORI. ​

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.

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)

Recruitment

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

Research Team

Principal Investigator: Canadian Institutes of Health Research (CIHR), Canada

  • Doreen Bartlett, PT, PhD, Professor, School of Physical Therapy, Western University, London, Ontario, Canada and Scientist, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada

Principal Investigator: Patient-Centered Outcomes Research Institute (PCORI), USA

  • Sarah (Sally) Westcott McCoy, PT, PhD, FAPTA, Professor, Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, United States

Co-Investigators - CIHR & PCORI

  • Lisa Chiarello, PT, PhD, PCS, FAPTA, Professor, Department of Physical Therapy and Rehabilitation, Sciences, Drexel University, Philadelphia, Pennsylvania, United States
  • Bob Palisano, PT, ScD, FAPTA, Distinguished Professor,  Department of Physical Therapy and Rehabilitation, Drexel University, Philadelphia, Pennsylvania, United States, and Scientist, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada
  • Lynn Jeffries, PT, DPT, PhD, PCS, Associate Professor, Department of Rehabilitation Sciences, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, United States
  • Alyssa LaForme-Fiss, PT, PhD, PCS, Associate Professor, Department of Physical Therapy, Mercer University, Atlanta, Georgia, United States
  • Jan Willem Gorter, MD, PhD, FRCP(C), Associate Professor, Department of Pediatrics, Scotiabank Chair in Child Health Research and Director, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada
  • Steve Hanna, PhD, Professor, Department of Clinical Epidemiology and Biostatistics, and Scientist, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada

Co-Investigator - PCORI

  • Kristie Bjornson, PhD, PT, PCS, Associate Professor, Department of Pediatrics, University of Washington, Seattle, Washington, United States
  • Cheryl Kerfeld, PhD, PT, Acting Assistant Professor, Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, United States

Parent Investigators - CIHR & PCORI

Parent Investigators - PCORI

Study Coordinator for Canada and USA - CIHR

Study Coordinator for USA and Canada - PCORI

Regional Coordinators - CIHR & PCORI

PhD Students

For general study information, please contact the On Track Project Coordinator for Canada and USA, Barb Galuppi galuppi@mcmaster.ca or Monica Smersh msmersh@uw.edu

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Funder

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

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

Outcomes (Measures)

Study Assessors collect information about:

People involved in research studies sometimes wonder why they don't get more information about 'how they did' in the tests or assessments that the researchers do. We thought it might be helpful to explain why this is so.

When people visit a doctor or therapist we expect to receive individual attention! This means that the questions that are asked, the information provided, and the recommendations made are all done for that specific purpose and for that specific person.

On the other hand, in a research study we try to ask everyone the same questions, so we can gather "standardized" information. This allows us to look for patterns in the information when we put it all together at the end of the period of study. That way we can hopefully make some general comments about what we are studying. For this reason, the On Track Study Assessor's role is not to provide feedback about each child and family's assessments, or to offer advice about therapy.

Involving families in the research process is an important goal of this project. Within a few months of each study visit, families participating in the study will be sent a summary report explaining the results of testing for their child. (See Parent Feedback Forms below) 

Resources

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)

Selected Presentations & Posters

Demonstration Poster Presented at American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Conference in Milwaukee, Wisconsin, USA (October 2013) and Ontario Association of Children's Rehabilitation Services (OACRS) Conference, Toronto, ON, CANADA (November 2013):

Demonstration Poster Presented at Section on Pediatrics of the American Physical Therapy Association (SoPAC) Conference in St. Louis, Missouri, USA (October 2014):

Poster Presented at the Combined Sections Meeting of the American Physical Therapy Association, Indianapolis, USA (February 2015). Also presented at Western University's Faculty of Health Sciences Research Day, London, ON, CANADA (March 2015) and Child Health Research Symposium, London, ON, CANADA (May 2015):

Poster Presented at Western University's Faculty of Health Sciences Research Day, London ON, CANADA (March 2015) and Child Health Research Symposium, London, ON, CANADA (May 2015) and Ontario Association of Children's Rehabilitation Services (OACRS) Conference, Toronto, ON, CANADA (Nov 2015):

Poster Presented at Child Health Research Symposium, London, ON, CANADA (May 2015):

Instructional Course presentation at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Austin, Texas, USA in Oct 2015.

Presentation at Division of Early Childhood (DEC): 31st Annual International Conference on Young Children with Special Needs and Their Families in Atlanta, Georgia, USA in Oct 2015:

Presentation at the Combined Sections Meeting of the American Physical Therapy Association (APTA)  in Anaheim, California, USA in February 2016:

Poster Presented at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Presentation at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Poster Presented at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Poster Presented at Combined Sections Meeting (CSM), American Physical Therapy Association (APTA), in Anaheim, California, USA in February 2016.

Mini-symposium presentation at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at 5th International Conference of Cerebral Palsy (ICPC) Stockholm, Sweden in June 2016.

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at IV Step Prevention, Prediction, Plasticity, and Participation, Ohio in July 2016

Poster Presented at American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), Florida in September 2016

Poster Presented at American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), Florida in September 2016

Instructional Course presented at the American Physical Therapy Association Combined Sections Meeting (CSM), Texas in February 2017

Articles

Jeevanantham, Deepa MPT; Dyszuk, Emily MSc; Bartlett, Doreen PT, PhD. The Manual Ability Classification System: A Scoping Review. Pediatric Physical Therapy: Fall 2015 - Volume 27 - Issue 3 - p 236-241 (online)

Bartlett D, Galuppi B, Palisano R, McCoy S. Consensus classifications of gross motor, manual ability, and communication function classification systems between therapists and parents of children with cerebral palsy. Letter to the Editor. Developmental Medicine and Child Neurology, 2016; 58:98-99. (online)

Robert J. Palisano (2016) Bringing the Family's Voice to Research, Physical & Occupational Therapy In Pediatrics, 36:3, 229-231, (online)

Natalie V. Scime, Doreen J. Bartlett, Laura K. Brunton & Robert J. Palisano. (2016). Parents’ Experiences and Perceptions when Classifying their Children with Cerebral Palsy: Recommendations for Service Providers. Physical & Occupational Therapy In Pediatrics, Early online DOI: 10.1080/01942638.2016.1185505

Doreen Bartlett, Lisa A. Chiarello, Tina Hjorngaard & Barbara Sieck Taylor (2016). Moving from parent “consultant” to parent “collaborator”: one pediatric research team’s experience. Disability and Rehabilitation. Pages 1-8 | Received 15 Dec 2015, Accepted 28 Jul 2016, Published online: 27 Sep 2016. http://dx.doi.org/10.1080/09638288.2016.1219402

Reports

Family Feedback Forms

Family Feedback Form sample

After each study visit, parents will receive individualized feedback with a summary of their child's scores in Balance, Strength, Range of Motion, Endurance, Overall health, Participation in Family and Recreational Activities and Self-Care Activities. This report allows us to give families some immediate, brief feedback about the visits. However, more detailed results will be available at the end of the study once we have completed all the visits over time for the large group of children in the study.

Parents are encouraged to share the feedback forms with the child's treating therapist(s) to help therapists consider how child, family, and service factors interact when planning interventions and evaluating outcomes. The intent is to facilitate this exchange between families and therapists to broaden the focus of rehabilitation services for young children with CP to include not only development of motor abilities but also comprehensive interventions and supports to enhance participation in daily activities and routines.


Parent to Parent Articles written by parents for parents

Parent to Parent articles are helpful resources written by the Parent Investigators in the On Track Study. New articles will be posted as they are available.

For more useful tips like these on the CanChild website, see Tips FOR parents of children and youth cerebral palsy, FROM parents (English)