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Congenital Heart Surgeons' Society Data Center
Cohort Studies

The CHSS Data Center conducts multi-institutional, longitudinal research. Study participants are enrolled at different institutions across the United States and Canada, and the information is sent to the CHSS Data Center, which is located at The Hospital for Sick Children (SickKids) in Toronto, Canada. The Data Center will send annual follow-up questionnaires to all study participants, even if the study has been closed to enrollment.

This section contains all the documents you will need to complete your Institutional Review Board (IRB) or Research Ethics Board (REB) submissions.

The following cohorts are open to enrollment. Please navigate to each cohort page to find documents related to each of these studies.

Each institution receives their own institution's Research Activity Report semi-annually, or at any time if requested. Please contact us for more information on Research Activity Report.

Enrolling Studies

Non-Enrolling Studies

The following studies are actively followed, however they are closed to further enrollment.

Memorandum

Enrollment numbers as of June 1, 2021:
Enrollment Numbers
*EA - Enrollment has begun at The Hospital for Sick Children only but is delayed until conversion to a registry is complete.
*LVOTO - This is a non-enrolling cohort that is temporarily paused to further enrollment, however the study is actively followed.
*PC - This is a non-enrolling cohort that is closed to further enrollment, however the study is actively followed.