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A Research and Knowledge Network for Genetic Health Services and Policy: Building on the APOGEE-Net and CanGeneTest Experiences

 

Summary

The objective of the project is to create a research and knowledge network that will facilitate the transfer of clinically useful and cost-effective genetic-based innovations towards applicable healthcare systems and will support the development of evidence-based health policies. Formed by two complementary research teams, which together create a new knowledge network, this project focuses on genetic-based innovations currently being introduced into practice through the initiative of genetic laboratories.

The merging of two large multidisciplinary research initiatives into a Canadian research and knowledge network will facilitate, develop, and maintain synergistic connexions between decision makers, healthcare professionals, the general public, and the genetic research and innovation community and different research initiatives. These two levels of coordination and synergy will allow participants to address questions at all decision-making levels in three different areas of investigation: 1. service delivery models; 2. genetics in primary care;and 3. the assessment of emerging technologies.

This emerging team includes researchers, clinicians, public health experts, organizations, and decision-makers from four provinces, the federal government, and the international community. It will address genetic issues of national importance and will ensure a large and equitable distribution of knowledge and research outputs (including tools) among Canadian stakeholders.

Publications:

Légaré F, St-Jacques S, Gagnon S, Njoya M, Brisson M, Frémont P, Rousseau F. Prenatal screening for Down syndrome: a survey of willingness in women and family physicians to engage in shared decision-making. Prenat Diagn. 2011 Jan 26.

Légaré F, Kearing S, Clay K, Gagnon S, D'Amours D, Rousseau M, O'Connor AM. Are you SURE?: Assessing patient decisional conflict with a 4-item screening test. Can Fam Physician. 2010 Aug;56(8):e308-314.

Gagnon S, Labrecque M, Njoya M, Rousseau F, St-Jacques S, Légaré F. How much do family physicians involve pregnant women in decisions about prenatal screening for Down syndrome? Prenat Diagn. 2010 Feb;30(2):115-121.

St-Jacques S, Grenier S, Charland M, Forest JC, Rousseau F, Légaré F. Decisional needs assessment regarding Down syndrome prenatal testing: a systematic review of the perceptions of women, their partners and health professionals. Prenat Diagn. 2008 Dec;28(13):1183-1203. Review.

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Last page update 2016-01-28