Improving Lives of Children and Youth with Neurodevelopmental Disabilities

Funding Details
Canadian Institutes of Health Research
  • Grant type: SPOR Networks in Chronic Disease - LOI
  • Year: 2014/15
  • Total Funding: $50,000
Keywords
Principle Investigator(s)
Collaborator(s)

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Project Summary

Neurodisabilities such as Down Syndrome and epilepsy profoundly affect the lives of as many as one in six Canadian children and their families. In addition to their main diagnosis, many children with a neurodisability also have other chronic conditions such as attention deficit hyperactivity disorder or anxiety. Often these children do not get diagnosed early enough, and their parents have trouble locating and accessing appropriate services. A SPOR in Developmental Neurodisabilities will have a transformative impact on children and young adults with these conditions, on their parents and caregivers, and will save costs for health care, education, and even corrections. The proposed Network will work to change the system of care for children with neurodisabilities and the associated chronic conditions by placing the child and family at the centre of an integrated research program. The network will promote evidence-based clinical practice, treatments and services, and emphasize research that looks at key functional deficits such as sleep, social participation, and motor function, that compromise quality of life and long-term health outcomes in children with a wide range of neurodisabilities. The network will achieve these goals by establishing a "learning health care system" that responds to the needs of the patient and parent for best care. We will collaborate with international, national, provincial and community-based organizations committed to best practices. Identifying the most appropriate, cost-effective, and evidence-based diagnostics and interventions will ensure that children with neurodisabilities and the associated chronic conditions receive the right care, at the right time, in the right place.

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