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Welcome to CIRENE, a unique project in North America that is essential for the future of Quebec’s children

Neurodevelopmental disorders affect 10% of the population and about 17% of children and adolescents in Quebec.  These conditions are multiple and diverse, including attention deficit disorders with or without hyperactivity (ADHD), language disorders, intellectual disability, autism, multiple handicaps and the consequences of epilepsy.  These disorders are complex and are difficult to diagnose in the course of a routine follow-up.  They require extensive explorations including genetic testing and the use of experts from different disciplines.

This may explain why more than half of the children are not identified until they start school, in spite the fact that we know for sure that if a catch up is possible, the window of opportunity is between birth and 7 years of age, which is the main period of brain development, critical to act and influence key acquisitions essential for the rest of the life of the individual.

CIRENE’s mission is to make available for all of Quebec’s children an early screening and diagnosis of neurodevelopmental disorders so that an early intervention protocol is established with parents and the school community with family support measures.

Sadly, the problems encountered today are multiple :

  • Children are refered too late (especially in disadvantaged areas) with waiting lists too long to obtain appropriate early intervention;
  • The first line services that can appreciate difficulties are variable : daycares, CLSC, CIUSS, family physicians, medical or psychiatric clinics, emergencies, while assessment and family support services are not homogenous;
  • Lack of cohesion and fluidity is important between services and health or school organizations.  There are few multidisciplinary clinics and criteria for a referral to a rehabilitation center are not respected;
  • The collaboration with community services is not optimal for many reasons, but mostly because of the absence of service corridors supported by professionals that assure the link and communication between the child, his family, his community and other living environments like the school or the daycare;
  • Parents are often left to themselves because of a lack of resources and support and often lost in a maze of bureaucracy.

Sainte-Justine University Health Center is home to the largest number of specialized clinicians in all fields of neurodevelopment (more than 45) and the largest concentration of researchers (nearly 40) in brain development and genetics in Quebec.  Major discoveries are to their credit and they are part of internationally recognized teams.

With the help of the Centre de coordination des activités du Réseau (CCAR), that assures the coordination in all Quebec of health resources 24/7 and of a web platform to collect the needs of the population and to transmit information, CIRENE wish to be an answer to these numerous problems and to create a real network of neurodevelopment in Quebec.  In fulfilling the links with the community and pursuing the knowledge transfer to professionals and parents, this project will be ongoing and will transform the neurodevelopmental services for the future.

Specific and measurable objectives

  • Reduce waiting times and waiting lists
  • Intervene early, because of an early diagnosis, by integrating into a single continuum research, care and knowledge transfer around the child and his family
  • Intensify research to better understand brain development problems, revolutionize the diagnosis process and find new treatments
  • Create, with our partners, a real neurodevelopmental network in Quebec, in a concerted and integrated way and in a geographic continuum of bidirectional services corridors.

Specific methods

  • Create a unique space at CHU Sainte-Justine and virtual space across Quebec for a relevant, coordinated and fast supported care close to the child’s environment
  • Develop integrated clinics with psychiatry, neurology, genetics and developmental pediatrics along with neurodevelopmental allied health professionals to reduce investigation time and provide a concrete response plan
  • Integrate research and teaching to care with multidisciplinary collaborative teams
  • Recruit researchers specialized in neurodevelopmental disorders to introduce new pharmacological, behavioral or psychosocial therapeutic strategies
  • Optimize the virtual platform to interconnect all stakeholders of the Network, community partners and parents and ensure their involvement in the screening and support processes
  • Facilitate the coordination of services offered to parents and families in the guidance and support.
About this page
Updated on 8/18/2015
Created on 12/19/2014
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