Authors' recommendations: A comprehensive RA registry in Alberta would generate the comparative effectiveness data required to guide best clinical practice in these critical areas. Disease registries allow us to compare the performance of different therapies in routine clinical practice. Registries can serve many purposes including: - understanding the natural history of a disease; - determining the clinical effectiveness and cost-effectiveness of healthcare therapies and services; - measuring and monitoring safety and harm; - measuring the quality of care; and - supporting clinical decision-making. Over the past two decades, clinicians, the research community, and policy-makers in a number of countries worldwide have developed and implemented their own national/regional RA biologic therapy registries to monitor patients over time.11 As RA treatment guidelines recommend an earlier, aggressive treatment approach and subsequent entry biologics (SEBs) are introduced, the need for such registries in Canada is becoming more apparent. A need also exists for comparative effectiveness studies, which require high quality data collected longitudinally from the RA patient population over the continuum of care in routine practice. Rheumatoid arthritis in a policy perspective: A registry for research and better treatment of Albertans vii Alberta has the opportunity to vault to the forefront of capturing data and generating evidence on RA therapies, helping solidify its position as a leading Canadian centre of research and innovation in arthritis prevention and treatment. The Alberta Biologics Pharmacosurveillance (ABioPharm) registry collects data on all biologic agents available to its population base, but data collection does not begin until the start of biologic therapy. Applying our experience with the ABioPharm biologics registry as a base, Alberta can build a registry of all RA patients that is sustainable and would be the first in Canada to capture data on patients along every point in the continuum of care. An RA registry in Alberta would serve as a "learning system" resource, capable of changing over time in response to new technologies, better treatments, and shifting patient demographics in the province.12 Given the high rate of comorbidities in the RA population and the disease's negative impact on productivity, a resource with this capability would generate important health, social, and economic gains for Alberta.

Project Status: Completed

Year Published: 2015

URL for published report: http://www.ihe.ca/advanced-search/rheumatoid-arthritis-in-a-policy-perspective-a-registry-for-research-and-better-treatment-of-albertans

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: Canada

Organisation Name: Institute of Health Economics

Contact Address: 1200, 10405 – Jasper Avenue, Edmonton, AB T5J 3N4, Canada. Tel: +1 780 448 4881 Fax: +1 780 448 0018

Contact Name: info@ihe.ca

Contact Email: info@ihe.ca

Copyright: Institute of Health Economics (IHE)