Solve-RD Alberta: A precision health ecosystem for rare diseases

PROJECT LEAD(S)/CO-LEAD(S) Francois Bernier (University of Calgary), Martin Sommerville, Oksana Suchowersky (University of Alberta), & Kim Boycott (University of Ottawa Children's Hospital of Eastern Ontario Research Institute)
FUNDER Alberta Precision Health Initiative (APHI) Development Grant
PROJECT END DATE June 30, 2019
COMPETITION/ FUNDING OPPORTUNITY Alberta Precision Health Initiative (APHI) Development Grant

Precision Health is an emerging paradigm that promises to improve the health of Albertans by considering each patient’s unique genomic, environmental and lifestyle characteristics to create personalized prevention and treatment plans. To realize the full potential of precision health, newer methods of integrating high quality clinical information with genomic data and methods to improve sharing of data between clinicians as well as with researchers, are required. Rare diseases individually affect less than 1 in 2000 people, but collectively impact millions of Canadians, and offer a unique potential to further develop precision health. Solve-RD Alberta proposes to develop a Precision Health Network bringing together clinicians, genomicists, informaticians, scientists, industry, policy experts, health economists, ethicists and patient representatives. The goal of this project is to further develop Precision Health in Alberta and in Canada by creating and implementing a precision Health network to facilitate and guide the ethical use of health and genomic data to support clinical care, research, and national and international collaboration. Solve-RD Alberta will not only position Alberta to be leaders in precision medicine clinical care and research; it will also have an impact on the lives of Alberta patients and families living with rare diseases.

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