Abstract
BackgroundTo develop a population-based cohort of people with ankylosing spondylitis (AS) in Wales using (1) secondary care clinical datasets, (2) patient-derived questionnaire data and (3) routinely-collected information in order to examine disease history and the health economic cost of AS.MethodsThis data model will include and link (1) secondary care clinician datasets (i.e. electronic patient notes from the rheumatologist) (2) patient completed questionnaires (giving information on disease activity, medication, function, quality of life, work limitations and health service utilisation) and (3) a broad range of routinely collected data (including; GP records, in-patient hospital admission data, emergency department data, laboratory/pathology data and social services databases). The protocol involves the use of a unique and powerful data linkage system which allows datasets to be interlinked and to complement each other.DiscussionThis cohort can integrate patient supplied, primary and secondary care data into a unified data model. This can be used to study a range of issues such as; the true economic costs to the health care system and the patient, factors associated with the development of severe disease, long term adverse events of new and existing medication and to understand the disease history of this condition. It will benefit patients, clinicians and health care managers. This study forms a pilot project for the use of routine data/patient data linked cohorts for other chronic conditions.
Highlights
To develop a population-based cohort of people with ankylosing spondylitis (AS) in Wales using (1) secondary care clinical datasets, (2) patient-derived questionnaire data and (3) routinely-collected information in order to examine disease history and the health economic cost of AS
This study aims to develop a cohort of people with AS using existing data from clinical and routine sources and data collected from patient completed questionnaires
Ethics PAS has been granted ethical approval by the London Research Ethics Committee (08/H0718/64). This cohort takes its participants from GPs and rheumatologists
Summary
To develop a population-based cohort of people with ankylosing spondylitis (AS) in Wales using (1) secondary care clinical datasets, (2) patient-derived questionnaire data and (3) routinely-collected information in order to examine disease history and the health economic cost of AS. Ankylosing Spondylitis (AS) is a chronic inflammatory arthritis affecting between 1 in 400 and 1 in 270 people [1,2]. In a significant number of patients, AS is associated with inflammation of other organs such as the heart [4,5], eyes [6], bowel [7] and skin [8]. In common with most chronic inflammatory conditions, AS is heterogeneous, having a variable course and unpredictable episodes of exacerbation [9]. AS typically strikes people in their late teens or early adult life and runs for the remainder of the life-course. It has a significant impact on employment and
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