Background:  The Kidney Transplant Program at the Toronto General Hospital utilizes numerous electronic health record (EHR) platforms which house patient health information that are often not coded in a systematic manner to facilitate quality improvement and research. In recent years, the Comprehensive Living Kidney Donor (CLiKeD) database was developed for this purpose.
Methods: A team of multi-disciplinary professionals developed the framework and codebook for CLiKeD, which comprised data elements from the donor evaluation process, donor outcomes, costs, and quality-of-life measurements. To create CLiKeD, relational tables representing elements from performance measures and clinical tests domains, and linked to hospital-based costing data, were developed using MS Access. Training manuals for data abstraction and entry from EHR platforms were created to ensure all procedures were performed systematically.
Results: Currently, CLiKeD comprises over 21 data domains with 300 data elements. This includes information from all donor referrals since 1-Jan-2006 to the present. Data related to potential donors at different phases of their clinical evaluation have been systematically captured. Data linkages to matching recipient clinical information have been facilitated using appropriate data primary keys. The training manuals have led to the development of training courses and e-learning tools. A set of statistical codes developed utilizing the program Stata® were employed to perform data audits and validation checks to ensure maintenance of the quality of the databases and to produce standardized analytical datasets for ongoing and future research.
Conclusion: Data analysis from CLiKeD presented at programmatic retreats and scientific meetings will contribute to quality improvement and the knowledge base of living kidney donation and transplantation. Similar frameworks have a wide applicability for donor management systems in other healthcare institutions.