CAI Team & Partners

Sylvia Stöckler-Ipsiroglu, MBA, MD, PhD

Clara van Karnebeek, MD, PhD

Hilary Vallance, MD

Jean Paul Collet, MD, PhD

Wyeth Wasserman, PhD

Carlo Marra, PhD

Roderick Houben

Wynona Giannasi, MPA

Sylvia is the TIDE-BC project lead. Also the head of the Biochemical Diseases Division at BC Children’s Hospital, Sylvia works closely with all work package leaders and collaborators and division heads from other participating divisions, laboratories and research institutions. Sylvia’s educational and mentoring skills are illustrated by her fruitful collaboration with Dr. van Karnebeek, resulting in the systematic review on treatable ID which forms the basis of TIDE, “Treatable inborn errors of metabolism causing intellectual disability: A systematic literature review”, published in the Journal of Molecular Genetics and Metabolism. Sylvia has the critical role of ensuring the project is successfully delivered in accordance with partner expectations.
Clara van Karnebeek is the TIDE-BC’s clinician-scientist responsible for the implementation of the TIDE-BC protocol and the multidisciplinary complex diagnostic clinic and the co-leader for TIDE-BC. Clara’s leadership and experience with participating divisions across BC Children’s and Sunny Hill and laboratories through previous fellowship rotations, combined with ongoing research collaborations with Genome Sciences Centre and CMMT is an asset to the team. Clara co-authored (with Stockler) the systematic review that formed the basis for TIDE-BC.
Through continuous test development, the is the most comprehensive state-of the lab of its kind in Canada covering all major classes of inborn errors of metabolism. Introduced in 2003, the Biochemical Genetics Laboratory at BC Children's is the first in Canada to provide LC/MS/MS screening of purine, pyrimidine, and creatine disorders. A comprehensive Amino Acid method is currently being developed which will greatly increase the capacity for both screening and monitoring of patients. The BGL is responsible for all 1st tier tests of the TIDE-BC protocol, and facilitates targeted biochemical testing in the 2nd tier. Graham Sinclair is co-leading this work package.
Jean Paul Collet, along with Osman Ipsiroglu, Bill McKellin and PhD students Tammie Dewan (pediatrician) and Sravan J, is working toward develop and utilizing novel methodologies to support rare disease treatment and management. As Vice-Director Quality Evaluation at BC Children’s, JP is collaborating with the TIDE-BC team to translate clinical research into best practices to support the advancement of evidence based decision making.
As an established bioinformatics researcher, Wyeth leads a team of computational biologists, who are provide computational approaches to the management and analysis of genome sequence data for the discovery of mutations contributing to ID in TIDE-BC patients/subjects. Collaborating closely with Sylvia Stockler, Clara van Karnebeek, Hilary Valance and Patrice Eydoux (cytogenetic Laboratory), Wyeth is leading innovative discoveries that are yielding the discovery of new genes and new treatments.
As established health economist, outcomes researcher and director of CORE at UBC, Carlo, along with Tima Mohammadi, is evaluating the impact of early diagnosis and treatment of a specific rare disease, Niemann-Pick. Innovative simulation models are being researched and applied to determine the economic impact of early diagnosis and treatment.
In close partnership with Sylvia Stockler and Clara van Karnebeek, Roderick creates the infrastructure to translate clinical and scientific research into digestible knowledge for a wider audience. Roderick created the TIDE-BC website and the TIDE-BC WebApp, the first ever App for metabolic diseases designed for clinicians and scientists. With a strong feel for user friendliness Roderick works with the TIDE-BC team to create databases and online platforms to support the communication platform for TIDE-BC’s researchers, clinicians and administrators.
Working closely with Sylvia Stockler, Clara van Karnebeek and work package leaders, Wynona has developed organizational development tools necessary to support a strong partnership with clinical, researcher and academic organizations critical to the TIDE-BC Project. Wynona’s ongoing role in the TIDE-BC will be through the lens of sustaining the benefits achieved throughout TIDE by leading continuous improvement efforts, as well as measuring the benefits achieved throughout key milestones of the project.

Funding

TIDE-BC is the first Collaborative Area of Innovation funded through the BC Children's Hospital Foundation, Vancouver, Canada. To expand the project (inter-)nationally funding application is ongoing.

Copyright 2011 - 2016

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Contact Information

TIDE BC / Biochemical Diseases Clinic
BC Children's Hospital
Rm K3-208, ACB
4480 Oak Street
Vancouver, B.C. V6H 3V4

Phone: 604-875-2628 (administrative)
Phone: 604-875-2880 (clinic)
FAX: 604-875-2349