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Cystic Fibrosis Canada is providing an exciting opportunity for the cystic fibrosis (CF) community to participate in a new study that will study the impact, both in time and money, that cystic fibrosis has on people living with the disease, their families and on society. Launched today, The Social and Economic Impact of Cystic Fibrosis in Canada: A Burden of Disease Study is open for registrations now until July 25, 2021.
The study will collect information about the whole picture of life with cystic fibrosis: how much time is spent in clinics and hospitals, away from work and school, and how much time and money is spent on travel, medications, inhalers, diagnostics, home therapies, home-schooling and other aspects of life with the disease.
The results of the study will help to shape Cystic Fibrosis Canada’s programming, inform our advocacy work and help us educate decision-makers.
“Cystic fibrosis places a heavy burden on families impacted by the disease,” said Dr. John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada. “Those living with the disease spend two-hours a day on treatments, have frequent hospitalizations and for some, a lung transplant is their only option. This disease takes a toll, and this survey will help us to provide a clear picture of what that toll is.”
Canadians impacted by cystic fibrosis, including those living with and caregivers, are encouraged to participate in the study and share the study with their networks, in the hopes that many of the individuals and families impacted by cystic fibrosis in Canada will participate. The patient survey will take approximately 45-60 minutes to complete, while the caregiver survey will take 20-30 minutes to complete. Both do not need to be completed in one sitting.
Registration is open until July 25th. Participants who register will receive a unique link to the questionnaire shortly after. Participation in this study is voluntary. Participation to this study will include access and linkage with the Canadian CF Registry where possible.
To conduct the study, Cystic Fibrosis Canada has partnered with The Conference Board of Canada. The Conference Board of Canada is an independent applied research organization. Its custom research programs provide unbiased, focused research and analysis by an interdisciplinary team of academics, economists and business professionals.