FAQs for Participants

Q: How many children are participating in your studies? 
A: There are over 5000 patients enrolled in CHSS studies but each study is specialized in the number of patients that were enrolled. Please visit our resource section for a list of CHSS studies and the number enrolled for each.
 
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 enters 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 question regarding your or your child's health.
 
Q: I am a study participant. How often will you contact me?
A: A CHSS Staff member will contact you either by mail, phone or email annually to complete a one-page 2-sided follow up questionnaire form to find out how your child is doing.
 
Q: How long does the questionnaires take to complete?
A: Our standard questionnaire is a survey that you will be asked to complete and return.  It asks questions about medication, surgery or procedures completed within the last year. The questionnaire takes approximately 5-10 minutes to complete.
 
Q: How can I return the completed questionnaires to you?
A:  There are multiple ways to complete the questionnaires and send it back to us.
 
  • You can return the completed survey 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
  • Fax the forms to us at 416-813-8776
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:
  • Toll Free:  1-866-477-2477
  • Email: 
 
Q: When will CHSS Data Center study results be available?
A: CHSS studies are long term and ongoing. Past results can be viewed under Resources & Knowledge.  As new results are available, we will definitely let our participants know. Thank you for your valuable participation in our research studies!
 
Q: How can I check when something is published?
A: When there is a publication for a specific study, we will be updating our website regarding the publication. Also, we will be posting the manuscript along with a version completed in common language. Thank you to all of our study participants as these results would not be available without your help.
 
Q: How do I change my username & password?
A: After you log on to the CHSS Data Center website from the home page, please visit the member account information section to change your information. You can change your password as well as contact information, phone number and email address in case you move from one place to another.
 
Q: How do I remove my information & cancel my account?
A: Please contact CHSSdc staff or give us a call at our toll free number: 1-866-477-2477.