Objective: To identify the factors that lead to infection and spread of the virus by tracking the effects of COVID-19 in real-time on children with a rare disease.
Rare diseases affect one in 12 Canadians, two-thirds of whom are children (CORD, 2019). This patient monitoring system will focus on the younger population with either medically complex or rare diseases to assess families’ need for care, medical supplies, food, and other forms of support during these difficult times.
Led by Dr. Nora Fayed and her collaborators at Queen’s University in Kingston, Ontario, this monitoring system will provide broad insight to determinants of susceptibility or resistance to viral and other illnesses. The data collected will allow the medical community to develop the necessary safety measures to reduce the spread of infection within the rare disease community. This system will be introduced in Ontario and Alberta first, with other provinces to join as future funding allows.