CHILD-BRIGHT: An Overview for CFAN

At the end of March the Canadian Institutes of Health Research (CIHR), the largest funder of health research in Canada, announced that five national networks will receive nearly $25 million each (half from CIHR and half raised by the networks themselves) to address the needs of people living with chronic conditions and their families. One of the five—and the only one focused on children and youth—is CHILD-BRIGHT (Child Health Innovations Limiting Disability—Brain Research Improving Growth and Healthy Trajectories). CFAN wrote two letters of support for the project during the application phases and helped to gather responses to a national survey of parents and youth nearly a year ago. Parents linked to CFAN will have many opportunities to become involved in the project over the next five years. In fact, the project can be successful only with wide and deep participation of youth and parents.

CHILD-BRIGHT is a SPOR (Strategy for Patient-Oriented Research) initiative, which means that all aspects of the research (setting priorities, deciding on the research questions, analyzing the results, advocating for policy changes based on the research results, etc.) will be conducted with patients, a term that is the SPOR context includes families and other informal caregivers.

CHILD-BRIGHT will have three themes, chosen partly from the survey responses of parents and youth:

1.     BRIGHT Beginnings, which will focus on innovative early therapies

2.     BRIGHT Supports, which will focus on mental health and wellness support to children and youth with brain-based disabilities

3.     BRIGHT Futures, which will focus on key transition periods and the help families need throughout the long trajectory of the child’s—and the family’s—development.

Children with a range of brain-based conditions (autism, cerebral palsy, Down syndrome, ADHD, learning difficulties, etc.) and children at particular risk of brain-based disability, often as a result of being born premature, will be included.

There will be many and various opportunities for children, youth, and parents to become involved, and as in all SPOR projects patients and family members who participate will be appropriately remunerated. Donna Thomson, Dana Florence, and I are three parents who are among the co-investigators, and I will be chairing the Citizen Engagement Council in the first phase of the project. The lead investigators are Annette Majnemer (McGill), Steven Miller (SickKids), and Dan Goldowitz (UBC). Please contact me (frankgavin@rogers.com) if you have any questions or are interested in becoming involved.

 

Frank Gavin

National Liaison, CFAN