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Burden of Disease Study

UNDERSTANDING THE SOCIAL AND ECONOMIC IMPACT OF LIFE WITH CYSTIC FIBROSIS

Cystic Fibrosis Canada has engaged The Conference Board of Canada to conduct an analysis of the social and economic 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 time and money spent managing life with this complex and expensive disease. 

The findings will shape Cystic Fibrosis Canada’s programming, inform our advocacy work and help us educate decision-makers about what CF families need most.

People living with CF and their caregivers in Canada are encouraged to register for the study by July 25th, 2021.

What you need to know:

With the results, we will be able to model how interventions like Trikafta and other CFTR modulators may impact the clinical and financial burden of living with cystic fibrosis – on individuals, caregivers and society.

Please register today to take part in this important study. The findings will be shared with the community via a webinar later this year.

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. 

Any questions can be directed to Cystic Fibrosis Canada at burdenofdisease@cysticfibrosis.ca.

Download our infographic outlining how to register.

Register Today


FREQUENTLY ASKED QUESTIONS

The goal of this study is to better understand the impact of cystic fibrosis (CF) on people living with the disease and their caregivers. This includes costs, in both time and money, associated with CF. The information you provide will be used to better inform Cystic Fibrosis Canada’s programming, inform our advocacy work and help us educate decision-makers. 

Anyone living with cystic fibrosis in Canada or a caregiver of a person who lives with CF, can participate in the study. If you have CF and are over the age of 18 years, you are eligible to consent to the study. For anyone under 18 years of age, we will require a parent or guardian to give consent and complete the survey. A caregiver is anyone who helps in the daily living of someone with CF.

By responding to this survey, you will help better define time and cost as it impacts on your life dealing with cystic fibrosis. Your participation will help to capture the aspects of CF that are most burdensome to the community. The results will shape Cystic Fibrosis Canada’s programming, inform our advocacy work and help educate decision-makers about what families impacted by CF need most.

The survey should take approximately 45-60 minutes for patients and 20-30 minutes for caregivers to complete and does not need to be completed in one sitting. You may return to the survey at any time using the unique link assigned to you. Please keep in mind that the deadline to complete the survey is July 25.

No, the survey does not have to be completed in one sitting. You can pause and return to the survey at any time to pick up right where you left off by using your unique link to re-enter. Your progress is automatically saved so that you can pause the survey and come back to it at a later time. Please keep in mind the deadline to complete the survey is July 25.

In preparation for the questionnaire, you may need to have thethe following information for the 2020 calendar year handy, if it is applicable for you:  

  • A list of medical appointments
  • A list of days spent admitted to hospital (inpatient care)
  • A list of the times you had to go to the emergency department
  • A list of medications you are currently taking
  • Amount of money spent on medications and equipment
  • Amount of time spent on administering treatments and care
  • A list of days or time missed from work or school due to cystic fibrosis
  • The range of your household income as reported on 2020 tax forms
  • A list of any federal or provincial government subsidies received (e.g. the Disability Tax Credit)
  • Information about your insurance for extended health care benefits

For caregivers

  • Amount of time and money spent on caregiver duties

Your records may not be 100% complete, and that’s okay – just do your best to be as complete and accurate as you can.

You can email burdenofdisease@cysticfibrosis.ca to support any questions you may have about the study. We will try to reply to your email within 24 hours.

The first step to participate in the study is to register before July 25, 2021 and provide your consent to participate in the study.

If you live with cystic fibrosis we would also like your permission to link your survey responses to the Canadian CF Patient Registry data. To do so we will require your full name and date of birth. Completing the survey and providing consent to link your records is entirely voluntary.  You can complete the survey but decline to link your data without any penalty.

After you consent the Conference Board of Canada will then send you a unique link to access the survey. You will also be provided with a list of items that you will need to complete the survey.

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. The survey questionnaire will be administered by The Conference Board of Canada on behalf of Cystic Fibrosis Canada, and all information related to the study will be held in a confidential database.

Each person with CF can appoint up to three caregivers by providing their email at registration. Each caregiver then will be sent their own unique link to access the survey. You may want to discuss this with your family members as appropriate to identify someone who can speak to their experiences. If you are a parent/guardian completing a survey on behalf of your child you can submit your own email twice.

Caregivers that will complete the survey without a PWCF also completing their survey may register.

We recommend that you save the email containing your unique link. If you do lose your unique link, please email burdenofdisease@cysticfibrosis.ca who will be able to provide you with your link.

If participants are over the age of 18 years, they are eligible to consent to the study. In instances where the participant is not yet 18 years of age, we will require a parent or guardian to give consent on their behalf. Some families will have more than one member with CF. Each person will be consented separately. Each too will be asked to complete their own survey questionnaire. 

By electronically signing consent you will be agreeing:

  • You have understood the information regarding your participation in this study.
  • You understand the possible harms and benefits (if any) of this study.
  • You understand that you have the right not to take part in the study and the right to stop at any time. Your decision about taking part in the study will not affect your CF clinical care.
  • You are free, now and in the future, to ask questions about the study.
  • You agree for your personal information to be used to link to the Canadian Cystic Fibrosis Registry.
  • You agree to be contacted in the future for follow-up surveys for the current study.
  • You understand that no information will be shared or given to anyone without first asking your permission. 
  • You agree, or consent, to take part in this study.

Patient consent form and caregiver consent form.

To understand the true cost and time of living with CF, we would like to capture both the individual and health care costs. To minimize the time you need to spend completing the survey we hope to securely access your medical history to get a complete picture of what it costs to live with CF. The information in the Registry will help us identify things like your genotype, your pulmonary functional status, your nutritional status, your hospitalization history.

Information from the survey will be stored on a secure server within Canada. There are data security measures in place to protect your data including encryption, firewalls, password protection. Any variable that is considered personal health information has a second layer of encryption to protect your confidentiality. The survey itself is accessible only to very few individuals and will be anonymous. The study personnel will make every effort to keep your personal health information private and confidential in accordance with all applicable privacy legislations.

By giving your electronic consent, you are authorizing access to your responses by the research team, auditors designated by CF Canada, and the Research Ethics Board for the purposes of verifying the authenticity and accuracy of the information collected for this study, without violating your confidentiality to the extent permitted by applicable laws and regulations.

Participation is optional. Withdrawal will not affect your current or future medical care in any way. If you withdraw, information that was already authorized by you, and disclosed to the burden of disease study, will continue to be used; however, any new information about you or your CF will not be collected or used. If you wish to have data removed from the database, simply let the study investigator know.

Use of your personal information is subject to Cystic Fibrosis Canada’s privacy policy and will be kept confidential and will be anonymized. The personal information we collect from you for this study will be used internally to develop a better understanding of our community’s needs and to improve our stakeholder engagement. If you have questions, please contact: burdenofdisease@cysticfibrosis.ca.

We recognize that due to the pandemic, some of the information reported for the year 2020 may not be reflective of life with CF in previous years. We have accounted for this in our methodology and ask some questions in the survey to understand the impact of COVID-19. The information you provide in the survey will be combined with other sources of information to help us get a more complete understanding of the impact of CF in Canada overall, not just within this one year.

Yes, please share with others in your network who are eligible to participate (live with CF or are a caregiver for a person who lives with CF in Canada). We hope to gather a detailed picture of the true costs of life with cystic fibrosis and are looking to hear from as many people as possible. t’s important that we get an adequate number of families from each province to participate, so that the results are statistically significant. Valid, local results will ensure that Cystic Fibrosis Canada can shape local programming, educate national and provincial decision-makers and inform our advocacy for access to life-changing medications and quality CF care in each province.

Yes! Whether the person you previously provided caregiver responsibilities for will be taking the survey or not, the information you can provide is still valuable. Please consider the following for registration:

  • If you fulfilled caregiver duties in 2020 and the person with CF will also be participating in the study, please ask them to include your contact in the caregiver section of their registration. This will allow you to provide information on your current involvement as a caregiver as of 2020.
  • If you did not fulfill caregiver duties in 2020 and the person with CF will also be participating in the study, please register separately as a caregiver of a person with CF that will not be participating. This will allow you to indicate the year you were last involved as a caregiver, and you will be asked to provide information for that year.
  • If you did not fulfill caregiver duties in 2020 and the person with CF will not be participating in the study, please register separately as a caregiver of a person with CF that will not be participating. This will allow you to indicate the year you were last involved as a caregiver, and you will be asked to provide information for that year.

Parents/legal guardians of people with CF under age 18 are asked to consent and complete the patient survey on behalf of the person with CF. You will need to include your contact information in the caregiver section of the person with CF's registration to receive one unique link with access to both the patient and caregiver survey.

The caregiver survey will take approximately 20-30 minutes to complete.