FAQs for Participants & Families

Q: How many children are participating in your studies?
A: There are over 6000 patients enrolled in CHSS cohort studies and this number continues to grow on an annual basis. Some cohorts range from newborns all the way up to young adults.

Q: I am a study participant. How often will you contact me?
A: A CHSS DC Staff member will contact you, on an annual basis to complete a follow up form and questionnaires to find out how you are doing.

Q: How long do the questionnaires take to complete?
A: Our standard follow up form and non-standardized questionnaires take approximately 5-10 minutes to complete. These ask questions about your conditions and medication, surgery or procedures done within the last year. The standardized quality of life questionnaires (PedsQL™) are age-specific and will be completed (self administered) by you and/or your parent/guardian as applicable. These quality of life questionnaires take about 5 minutes to complete. Overall, the annual form and questionnaires take about 15-20 minutes to complete.

Q: How can I return the completed questionnaires to you?
A: There are multiple ways to complete the questionnaires and send these back to us.

  • You can return the completed questionnaires by using the self addressed stamped envelope we enclose with our mail
  • You can call us Toll Free at: 1-866-477-2477
  • Email the forms to us at chss.dc@sickkids.ca
  • Fax the forms to us at 416-813-8776

Disclaimer: Although email may be a very common method of communication, the security of email messages is not guaranteed. Messages sent to you or from you by email may be seen by others using the Internet. Email is easy to forge, easy to forward, and may exist indefinitely. For this reason, do not use email to communicate or discuss information you think is sensitive. By sending us information by email, or requesting that we send you information by email, you acknowledge that you have read and accept the risks of using email.

Q: What is done with medical reports requested from my doctors?
A: Once we receive your medical reports, our trained staff at The Hospital for Sick Children in Toronto codes and enter them in a secure electronic database. These databases can be used to generate aggregated information for all the patients whose data are entered in similar fashion. The aggregated data is then used for statistical analysis to answer specific questions regarding your health.

Q: When will CHSS Data Center study results be available? How can I check when something is published?
A: CHSS studies are long-term and ongoing. Past results can be viewed under the ‘Research’ tab. When there is a new publication for a specific study, we will be updating our website regarding the publication. Copies of most manuscripts can be found under ‘Research’>’Publications’. Thank you to all of our study participants as these results would not be available without your help!

Q: What if I change my address or telephone number?
A: In case of an impending move or change in telephone number, please let us know at:

Q: What if I am no longer interested in participating? What do I do in this case?
A: You may withdraw from the study at any time without any impact on your care. Please contact us to discuss this. If you withdraw or are withdrawn or discontinued from the study at any stage, no further information about you, or your child, will be collected for use in the analysis. However information already collected will continue to be used as needed to maintain the integrity of the research.

*you/I = participant or child of parent/guardian participating in the study