Skip survey header
Low Vision Mode

Canadian Food Allergy Economic Survey

Informed Consent


This information page is only part of the process of informed consent.
It will describe what the research is about and what your participation will involve.
If you would like more detail about something mentioned here, or information not included here, please ask. 

 

CANADIAN FOOD ALLERGY ECONOMIC SURVEY

SPONSOR: Allergy, Genes and Environment Network of Centres of Excellence (AllerGEN NCE)

INVESTIGATORS:

Ann Clarke, MD, MSc, FRCPC - University of Calgary
Susan Elliott, PhD - University of Waterloo

BACKGROUND
 
Food allergy is a growing public health issue in Canada that affects between 6 to 8 percent of Canadians. We want to know more about the health care costs experienced by families with food allergies. Your experiences with food allergies in your household are critical to helping us understand the economic impact of food allergy on Canadians and their families. We sincerely hope you will consider participating.

There are no Canadian data on the economic challenges experienced by individuals and families affected by food allergy. The few studies that exist were conducted in the United States and Europe and are not necessarily relevant for Canada.

We are planning to survey over 2,000 adults with food allergy or caregivers of children with food allergy who will be recruited through our National Food Allergy Registry, three Canadian food allergy associations, and allergy clinics.

We will ask questions about your/your child’s food allergy, the health care and other resources used due to food allergy and the time missed from work and other household activities due to food allergy over the past year.

WHAT IS THE PURPOSE OF THE STUDY?

To estimate all costs associated with food allergy in Canada by surveying adults with food allergy and caregivers of children with food allergy. Based on our findings, our research will greatly contribute to the development of supportive tools and policies for Canadians living with food allergy.

WHAT WOULD I HAVE TO DO?

We would like the member of the household who is the most knowledgeable about the impact of food allergy on the household to complete an online survey.

This survey should take up to 20 minutes to complete
. If you wish, you will be able to complete a portion of the survey and return later to finish the rest.

It will include questions on your/your child’s:
  • food and related allergies, reactions, treatments received and family history of allergies
  • health care use (i.e. doctor visits, allergy tests, emergency department visits, medications)
  • time missed from work, housework, volunteer activities, etc.
Following the completion of the survey, you will be asked to complete a shorter survey about other food allergic members in your household (if applicable). A link will be provided upon completion of the first survey.

This shorter survey should take up to 15 minutes to complete for each additional food allergic individual.
We understand that this requires a greater investment of your time; however, an accurate picture of the total household costs is critical to understanding the economic impact of food allergy on Canadians and their families.

WHAT ARE THE RISKS?

While there are no major or even minor risks associated with participating in this study, answering these questions may raise new concerns or remind you of existing concerns regarding the food allergies you are dealing with in your household. There will be no inconveniences beyond the time required to complete the survey.

WILL I BENEFIT IF I TAKE PART?

Your/your child’s participation in this research may provide no immediate benefit to you/your child.  However, the information collected from this study will help us to begin to understand the economic impact of food allergy on Canadians and their families.  This information would be essential in helping guide public health policy in the future.

DO I HAVE TO PARTICIPATE?
 
Your/your child’s participation in this study is strictly voluntary. You/your child may refuse to participate or discontinue participation at any time without explanation. If you/your child decide not to participate or discontinue participation, you/your child will experience no prejudice regarding ongoing medical care or participation in any other research studies.

Anonymized information (i.e.  research data stripped of all personal or direct identifiers) will be stored for future analysis and may be shared with other investigators.  However, any new research arising from this study will be submitted to the Research Ethics Board for approval.

WILL I BE PAID FOR PARTICIPATING, OR DO I HAVE TO PAY FOR ANYTHING?

You will not be paid to participate in this study and there are no costs to take part. Participants who complete the survey will be entered to win one of ten (10) pre-paid Visa gift cards valued at $50.00. Each gift card will be awarded randomly as an incentive for completing the survey. Participants have a 1 in 200 chances of winning.

WILL MY RECORDS BE KEPT PRIVATE?
 
All information obtained during this study will be kept strictly confidential. Your name will not appear anywhere in the database or a publication. The list linking your email to your unique study number will only be available to the research team and kept in a secure locked facility.

The online survey company we will be using is SurveyGizmo.  This company maintains data centers located in Canada.  They maintain high security standards and compliance with Canadian and Provincial legislation - PIPEDA (Personal Information Protection and Electronic Documents Act) and PHIPA (Personal Health Information Protection Act).

Surveys distributed from and information collected by SurveyGizmo in Canada are 100% stored in the Canadian data center located near Montreal, QC, and are not subject to the US Patriot Act.

More on Survey Gizmo's privacy policy can be found at: https://ca.surveygizmo.com/privacy/

Data exported from the survey platform for analysis will be stored in the University of Calgary's health knowledge hub, which is a secure server environment accessible only to the research study staff and housed at the University of Calgary's main campus.