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Collaborative Area of Innovation
Last updated: April 8, 2011, 3:45 p.m.
Latest News:
The first Collaborative Area of Innovation at BC Children’s Hospital and Sunny Hill Health Centre for Children was announced:
Treatable Intellectual Disability Endeavour in B.C. (TIDE-BC)
led by Dr. Sylvia Stöckler-Ipsiroglu with Dr. Jean-Paul Collet, Dr. Clara van Karnebeek, Dr. Carlo Marra, Dr. Hilary Vallance and Dr. Wyeth Wasserman.
Overview of TIDE-BC:
TIDE-BC promises to be life-changing for children with treatable forms of intellectual disability.
It features a diagnostic protocol of specific blood, urine, and genetic tests for identifying children with treatable intellectual disability that’s caused by inborn errors of metabolism.
A literature review showed that there are 75 inborn errors of metabolism that feature treatable intellectual disability.
Each year, approximately 1000 children with intellectual disability of all causes are assessed at BC Children’s. It’s estimated that 50 of these children have treatable intellectual disability.
Diagnosing these children earlier in their lives and providing them with therapy – diet, medication, or stem cell transplantation – to stabilize their condition as soon as possible can profoundly improve their development and their long-term outcomes.
TIDE-BC (
www.tidebc.org
) will lead international treatment intervention trials and produce a “best care” practice report for diagnosis and treatment. They will form a Rare Disorders Clinical Research Unit and a multi-specialty clinic for intellectual disability and complex case issues. They will do genetic screening to discover new genes that cause intellectual disability. The team will network with the Rare Disease Foundation, BC Clinical Genomics Network and NeuroDevNet and they will engage medical and advocacy groups in a new understanding of treatable intellectual disability. The TIDE-BC team has produced an
iPad app
to guide physicians through the protocol to find the specific lab test that’s best for each patient. In the first year of implementing TIDE-BC, the new protocol will be piloted with 400 children. In the second and third years, all children who present with intellectual disability at BC Children’s Hospital will be diagnosed using the new protocol.
Congratulations to the TIDE-BC team on their award as BC Children’s Hospital’s first Collaborative Area of Innovation.