CAN-ACT Registry
CANadian Aortopathy and Connective Tissue (CAN-ACT) Registry
We are proud to be founding members of the CANadian Aortopathy and Connective Tissue (CAN-ACT) Registry. Our partners include the Canadian Congenital & Pediatric Cardiodology Research Network, McGill University Health Centre, Dr. Frédéric Dallaire, Dr. Tiscar Cavallé-Garrido, Dr. Tim Bradley, and Dr Gregor Andelfinger.
This is the first Canadian registry for people with hereditary aortopathies and connective tissue disorders like Loeys-Dietz syndrome. The registry will be a secure, centralized collection of patient health data, including information on an individual’s genetics, cardiovascular and other symptoms, imaging, and medication. Centralized patient information can help investigators identify research themes, foster collaborative research, and improve patient quality of life and longevity.
If you are an investigator or clinician at an institution interested in contributing to the registry, please contact us.
Partnering Institutions for Enrollment Updates
- Stollery Children’s Hospital/ The Governors of the University of Alberta
- Children’s Hospital, London Health Sciences Centre/ London Health Sciences Centre Research Inc. Lawson Research Institute
- BC Children’s Hospital/ University of British Columbia
- CHU Ste-Justine/ CHU Ste-Justine
- Hôpital CHUS Fleurimont/ CIUSSS de l’Estrie CHUS
- IWK Children’s Heart Centre/ IWK Health Centre
- Montreal Children’s Hospital/ The Research Institute of the McGill University Health Center
- Children’s Hospital of Eastern Ontario/ CHEO RI
- McMaster Children’s Hospital / Hamilton Health Sciences Corporation
- SickKids/ The Hospital for Sick Children
- Jim Pattison Children’s Hospital/ University of Saskatchewan Saskatchewan Health Authority
- Health Sciences Centre Children’s Hospital/ University of Manitoba Shared Health
- Alberta Children’s Hospital/ The Governors of the University of Calgary Alberta Health Services
- Centre mère enfant Soleil/ CHU de Québec –Université Laval
- Victoria General Hospital/ Vancouver Island Health Authority
- Janeway Children’s Health and Rehabilitation Centre/ Memorial University of Newfoundland, Newfoundland and Labrador Health Services
- Kingston General Hospital/ Kingston General Health Research Institute Queen’s University
- Institute for better Health/ Trillium Health Partners
