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Brainstorming: Canada launches landmark national study on children’s brain development
If there’s a motto for NeurodevNet, a landmark Canadian effort in researching brain development, it’s this quote from Frederick Douglass, which appears on the project’s website: “It is easier to build strong children than to repair broken men.”
NeurodevNet (www.neurodevnet.ca), which launched in december 2009, is the first Canada-wide initiative dedicated to studying children’s brain development from both basic and clinical perspectives. The initial focus is on three conditions: autism spectrum disorder (ASd), fetal alcohol spectrum disorder (fASd), and cerebral palsy (Cp). The initiative will receive $19.6 million in funding over five years from the Networks of Centres of excellence of Canada. NeurodevNet is hosted by the University of British Columbia, and involves a network of experts in clinical assessment and treatment, genetics, epigenetics, imaging, model organisms, knowledge translation, informatics, and neuroethics; along with key partners in community, industry, and government. About 75 researchers are currently involved in NeurodevNet, which the network hopes to double in four to five years.
To accelerate the understanding of the causes of neurological deficits, researchers aim to answer three critical questions. One, how do we define “normal” human brain development? Two, how do we detect abnormalities in that development? Three, how do we fix impaired brains? The goal here isn’t just to increase research in each of ASd, fASd and Cp, but to share learning of common interest, says Dr. Daniel Goldowitz, scientific director for NeurodevNet.
“There’s a huge amount of interplay between our understandings of each of these and how the brain develops,” says Dr. Goldowitz, who is senior scientist at the Centre for molecular medicine and therapeutics, and Canada research Chair in developmental Neurogenetics, University of British Columbia.
QUALITY OF LIFE ISSUE
About 75 researchers are involved in NeurodevNet, which Dr. Goldowitz hopes will double in four to five years. The ability to better understand and treat brain disorders in childhood is critical given the enormous and prolonged impact of these conditions.
Brain disorders affect all aspects of life -learning, communication, socialization, and mobility. An inability to develop normal functioning in any one of these aspects, let alone several, can significantly reduce quality of life, and have enormous implications for the individual, for families, and for socio-economic costs.
“Burden of illness” calculations commonly look at years of life lost, rather than at the broader impact -how is quality of life affected through years lived with a disability? NeurodevNet reports that while neurologic and psychiatric disorders comprise 1.4 percent of deaths, they account for a whopping 28 percent of all years of life lived with a disability.
According to Neuroscience Canada, approximately 10 million Canadians will be afflicted, at some point, by a disease, disorder or injury of the brain, spinal cord or nervous system. With the enormous prevalence, and even with all of the advances in neuroscience, there’s still much that researchers don’t know about brain disorders.
Through NeurodevNet, researchers hope to identify new genes involved in brain development and function, improve diagnosis, and create earlier and better treatments for brain disorders. Another goal is to train the next generation of researchers in paediatric brain development.
The three disorders at the heart of NeurodevNet take a huge toll. One in about 150 children has ASd, which encompasses a group of disorders that share characteristics such as impairments in socialization and communication. One U.S. study that put the costs associated with raising a child with ASd -looking at factors from special education to social services to lost employment -at $3 million, half borne by parents.
According to the Autism Society Canada, lifetime assistance costs could be cut by 50 percent with early diagnosis and treatment, and adequate family support. NeurodevNet aims to improve our understanding of ASd’s causes, create better diagnostic strategies, and pinpoint molecular pathways relevant to developing biologically-based treatments.
For CP, the incidence of development is approximately 2-2.5 per 1,000 births. Cp is extremely complex; in addition to neuromotor impairments, it often features problems like epilepsy, cognitive limitations, sensory impairments, behavioural disorders, feeding difficulties, and musculo-skeletal complications. People with Cp frequently need access to a range of specialized care, as well as educational and social support services.
Recent estimates, reports NeurodevNet, suggest that the increased cost per case of Cp is roughly $1.5 million over a lifetime. Despite advances in preventing and treating some causes, the percentage of babies who develop Cp has remained unchanged for 30 years. NeurodevNet will explore potential avenues for both preventing future cases of Cp, and better treating existing cases.
The third area of NeurodevNet’s focus is fASd. Prenatal exposure to alcohol is a major, preventable cause of behavioural and cognitive deficits in children. Yet despite much research and awareness, fASd “represents a public health problem of epidemic proportions,” says NeurodevNet.
Fetal alcohol syndrome itself appears in an estimated 1-3 births per 1,000 in North America. However, gestational alcohol exposure produces a wider range of birth defects and abnormalities than those seen in fetal alcohol syndrome alone. This larger group, referred to as fASd, could occur as frequently as one in every 100 births. The estimated lifetime costs -$1-3 million per child.
With FASD, the impact of gestational alcohol exposure often goes undetected until the child reaches an age when normal functions should be maturing. The potential affects vary greatly, from mild-to-moderate brain dys func t i o n s (e. g. memory, social communication, attention span, motor and sensory), to childhood depression, anxiety, and other mental health conditions. The combination can lead to severe adaptation problems at home, school or work, and in society.
The NeurodevNet researchers will explore a few fundamental questions. How do genetic and environmental factors interact with gestational alcohol exposure to produce common deficits in children (neurobehavioural and neurobiological)? And how to best to develop diagnosis and treatments for affected children?
Can NeurodevNet help to “build strong children” so we have fewer broken adults to repair? Considering the long-term consequences of brain disorders, doing so would have an enormous impact not only on children who suffer from these disorders, and their families, but on all of Canadian society.
“Nothing is more heart wrenching,” says Dr. Goldowitz, “than a brain disability that limits a child’s participation in society. That’s the difference we want to make.”
Source: National Post Friday, March 26, 2010