Participant Consent Form
You are invited to participate in a research study entitled: Crohn's and Colitis Canada's Patient and Caregiver Unmet Needs Survey
At the end of the survey, you will be given the opportunity to enter a draw to win one of three $100 e-gift cards as a thank you for your participation.
If you have any questions, please fee free to contact us:
Kate Lee, Vice-President, Research & Patient Programs, Crohn’s and Colitis Canada, 1-800-387-1479, research@crohnsandcolitis.ca
Jessica McCutcheon, Survey Research Specialist at CHASR, University of Saskatchewan, 306-966-6525, jessica.mccutcheon@usask.ca
Purpose and Objective of the Survey:
- To identify unmet needs and gaps in care experienced by individuals living with Crohn’s disease, ulcerative colitis, and other forms of inflammatory bowel disease (IBD)
- To inform the development of future programs, policies, and priorities led by Crohn’s and Colitis Canada, ensuring they are aligned with real-world needs and priorities of the IBD community.
- To generate evidence-based recommendations for improving healthcare delivery, patient education, and support services for people living with IBD across Canada.
Procedures:
- Participation includes completion of an online survey that will ask you about your experiences living with IBD. Topics include symptom management, treatment and medication use, understanding of IBD, information-seeking, and interactions with healthcare professionals.
- This online survey will take approximately 30 minutes of your time to complete.
Funding:
This survey is paid for by Crohn’s and Colitis Canada.
Potential Risks:
- This survey should pose minimal to no risk.
- Some individuals may experience mild psychological or emotional discomfort when reflecting on experiences with IBD, or in providing care for someone with IBD.
- You do not have to respond to any questions you are uncomfortable with. You can withdraw from the survey at any time by closing your internet browser.
- Supports can be found from the following:
Potential Benefits:
The results of this survey will offer valuable insights into a broader understanding of the unmet needs and lived experiences of individuals with IBD.
Your perspectives will play a crucial role in shaping recommendations for programs and services provided by Crohn’s and Colitis Canada.
Confidentiality:
- Participation in this survey is anonymous, unless you choose to provide your contact details for follow-up activities.
- Participants who choose to provide their contact information for follow-up activities will have their contact information linked to their survey responses, meaning they will no longer be anonymous. This linkage is necessary to enable future contact, but personal information will be password-protected and only accessible to authorized members of the survey team.
- This survey is hosted by Voxco. Your data will be stored in facilities hosted in Canada. Please see the following for more information on the Voxco’s Privacy Policy: https://www.voxco.com/privacy-policy
- Aggregated data may be used to create a public report available on the Crohn’s and Colitis Canada website and may be published or presented academically. Anonymized comments from open-ended responses may also be included.
Storage of Data
The resulting dataset from this survey will be the responsibility of CHASR and Crohn’s and Colitis Canada. Data will be stored indefinitely on the University of Saskatchewan DATASTORE secure servers (with daily backup) and OneDrive servers and will only be accessed by the survey team.
Right to Withdraw:
- Participation in this survey is voluntary.
- You can decide not to participate at any time by closing your browser. Incomplete surveys will not be retained.
- Once your survey has been submitted, we cannot withdraw your data if you submitted anonymously. If you provided your contact information for follow-up, you may email jessica.mccutcheon@usask.ca within one week of survey completion to withdraw your data.
Compensation:
- At the end of the survey, you will be given the opportunity to enter a draw to win one of three $100 e-gift cards as a thank you for your participation.
- Entry into the draw is optional and your personal information will not be linked to your survey responses. Any personal information collected as a record of honorarium payment will be stored separately from the data by CHASR and may be kept for 7 years in case the University of Saskatchewan is subjected to a financial audit.
- If you choose to withdraw from the survey before completion, you may still enter the draw by contacting the survey administrator at jessica.mccutcheon@usask.ca with your name and email address within one week of withdrawal.
- Winners will be selected at random after survey closure and will be contacted by email.
Follow-up:
- Information gathered from this survey will be used to inform future activities, programming, advocacy, and healthcare improvement efforts related to IBD.
- Check the Crohn’s and Colitis Canadawebsite at https://crohnsandcolitis.ca/About-Us/Resources-Publications for a final report that will be available in 2026.
Questions or Concerns:
- Contact our team using the information at the top of the page.
- This research project has been approved on ethical grounds by the University of Saskatchewan Behavioural Research Ethics Board. Any questions regarding your rights as a participant may be addressed to that committee through the Research Ethics Office: ethics.office@usask.ca; 306-966-2975; out of town participants may call toll free 1-888-966-2975.
By completing and submitting this questionnaire, your free and informed consent is implied and indicates that you understand the above conditions of participation in this survey. If you are a caregiver, you have discussed the survey with the person you care for, who has consented for you to share their information. It is recommended that you print or save this page for your records.