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
- AAOCA
- AVSD
- LVOTO
- TA
- EA * enrollment has begun at SickKids but is delayed until conversion to a registry is complete
Non-Enrolling Studies
The following studies are actively followed, however they are closed to further enrollment.
- TGA: Transposition of the Great Arteries
- IAA: Interrupted Aortic Arch
- PAIVS: Pulmonary Atresia with Intact Ventricular Septum
- PSIVS: Pulmonary Stenosis with Intact Ventricular Septum
- CoA: Coarctation of the Aorta
- AVA: Aortic Valve Atresia
- AVS: Aortic Valve Stenosis (or hypoplasia of the left ventricle inflow/outflow without complete atresia)
- PC: Pulmonary Conduit
Enrollment numbers as of January 4, 2023:
*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.