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
- University of Saskatchewan/Jim Pattison Children’s Hospital
- McGill University/Montreal Children’s Hospital
- Université de Sherbrooke/Hôpital Fleurimont (CHUS)
- Université de Montréal/CHU Sainte Justine
- Memorial University of Newfoundland/Janeway Children’s Hospital
- Dalhousie University/IWK Children’s Heart Centre
- CHU de Québec – Université Laval/Centre mère enfant Soleil
- University of Ottawa/Children’s Hospital of Eastern Ontario
- McMaster University/McMaster Children’s Hospital
- Western University/Children’s Hospital, LHSC
- Queens University/Kingston General Hospital
- University of Manitoba/HSC Children’s Hospital
- University of Calgary/Alberta Children’s Hospital
- University of Alberta/Stollery Children’s Hospital
- University of British Columbia/BC Children’s Hospital
- Vancouver Island Health Authority/Victoria General Hospital
