The Alberta Kidney Disease Network (AKDN) is a collaborative group of nephrology researchers located in Calgary and Edmonton, Alberta, Canada, with a mission to undertake clinical research and offer research training in kidney disease. The flagship initiative of the AKDN is a unique data collection initiative of routine laboratory tests on all patients in the province of Alberta, resulting in a geographically inclusive database. Patients identified from laboratory data are linked to administrative and other computerized sources to obtain detailed information including socio-demographic data, clinical data including comorbidities, health care encounters, health care costs, death, and kidney-related outcomes.
As the initiative grows the AKDN research findings and activities are beginning to appear more frequently in peer-reviewed literature and health policy circles [1
]. However, a detailed description of the network's objectives, details of the laboratory database and linked data sources, as well as the process for ongoing patient data collection has not been published. This paper provides such a description, and includes examples of research undertaken as well as future research opportunities for the AKDN.
Objectives of the AKDN
The AKDN objectives are focused around key research methodologies: clinical epidemiology; health services research; clinical trials; systematic review and meta-analysis; and health economics. Five specific aims relevant to the AKDN dataset were initially identified:
1. To determine the prevalence and identify those at high risk for chronic kidney disease in Alberta, Canada.
2. To determine rates of progression of chronic kidney disease.
3. To determine if access to/quality of specialized medical care and/or rates of progression of kidney disease differs by gender, age, location of residence or ethnic background.
4. To determine the health care costs of caring for patients with chronic kidney disease.
5. To determine optimal treatments for patients with chronic kidney disease.
This is not an exhaustive list, and as the Network grows more objectives and research questions are being addressed. The examples of on-going research projects outlined below demonstrate the potential of this data source.
The AKDN has also developed a plan to facilitate implementation of its research findings. These knowledge translation activities target patients, health care providers, researchers and health policy-makers. These activities aim to provide information to patients regarding kidney function and disease in general, health care providers to assist with investigation and management of patients with chronic kidney disease, and policy makers to guide evaluation and planning of health service delivery for patients with chronic kidney disease. A website http://www.AKDN.info
was established to facilitate knowledge translation activities, as well as to provide information regarding team members, training opportunities and research activities.