Study registration

Understanding the social and economic impact of life with cystic fibrosis

Deadline extended

Cystic Fibrosis Canada has partnered with The Conference Board of Canada to study the financial and social impact of life with cystic fibrosis on individuals, caregivers, and society. The Social and Economic Impact of Cystic Fibrosis in Canada: A Burden of Disease Study will examine the financial and socio-economic impact of the time and money spent managing life with this complex and expensive disease. This information will be collected from people living with cystic fibrosis and/or their caregivers via a questionnaire.

Canadians living with cystic fibrosis and their caregivers may register now for the study. Participation in the study means completing a questionnaire about your experiences living with or providing care to someone with cystic fibrosis. To confirm participation in the study, you will be asked to provide informed consent as part of the registration process.

Upon registration, The Conference Board of Canada will send you, via e-mail, a unique link to the questionnaire. The patient questionnaire should take approximately 45–60 minutes, while the caregiver questionnaire should take 20–30 minutes to complete. Both surveys do not need to be completed in one sitting. Participants can pause and return to the survey at any time using their unique link. All information you provide will be kept confidential and any personal details will be removed (i.e., information you provide will be de-identified). Before accessing the questionnaire, you will be asked to review and sign a consent form. Participation in this study is voluntary. With your consent and where possible, participation will include accessing and linking questionnaire data with the Canadian CF Registry data.

Detailed instructions about completing the questionnaire, including what information you may need to have readily available, will be sent along with the unique link. For your reference, here are the direct links to the study consent forms (patient consent form and caregiver consent form), list of medicines, and answers to frequently asked questions (FAQ).

Deadline extended.

The findings from this study will shape Cystic Fibrosis Canada’s programming, inform its advocacy work, and help educate decision-makers about what families impacted by cystic fibrosis need most. Findings will be shared with the CF community by CF Canada later this year.

Register now

Any questions can be directed to [email protected].

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.

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