The CCTCC’s Patient Registries Project is complimentary to the Canadian Clinical Trials Asset Map (CCTAM) database. Descriptions and contact information for active patient registries are actively being sought and inputted into the CCTAM.
A criteria for identifying active patient registries able to assist in clinical trial recruitment efforts was developed by the CCTCC Patient Registries Working Group led by Dr. Lawrence Korngut. Dr. Korngut has led in the past a team of registry leaders and disease experts in developing the Canadian Neurological Registry Best Practice Guidelines and an accompanying implementation toolkit.
The key criteria for identifying active patient registries is available here.
The type of information being collected about patient registries is available here.