CC 1 - National Data Infrastructure

Dr. Cedric Manlhiot
  Dr. C. Manlhiot

 

 

 

 

 

 

The National Data Infrastructure for TRANSFORM HF will include the incorporation of fundamental genomic and biomedical data, utilization of novel data integration technology to enable:

  • The generation of deep clinical data and innovative clinical research methods (e.g., pragmatic trials, real-world evidence).
  • The direct involvement of patients through self-enrollment and provision of data (e.g., activity monitors, social media data, etc.).
  • Interaction with education/counselling resources.

A patient-oriented data infrastructure (mobile health, patient platform and education) will be developed. In parallel to the implementation of these technical solutions, we will establish dedicated work streams to ensure patient privacy, data access, analytics and data governance policy development. The dedicated infrastructure that is required for TRANSFORM HF (e.g., technologies, frameworks and governance) will be available as a roadmap for pan-Canadian networks studying other patient populations.

 

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