Protocol for a population-based ankylosing spondylitis (PAS) cohort in Wales.
BACKGROUND
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.


METHODS
This 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.


CONCLUSIONS
This 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.
Atkinson
Mark D
MD
School of Medicine, Swansea University, Singleton Park, Swansea SA2 8PP, UK. m.atkinson@swansea.ac.uk
Brophy
Sinead
S
Siebert
Stefan
S
Gravenor
Mike B
MB
Phillips
Ceri
C
Ford
David V
DV
Jones
Kerina H
KH
Lyons
Ronan A
RA
D002985:Clinical Protocols / Q000592:standards*; D015331:Cohort Studies; D003430:Cross-Sectional Studies / Q000379:methods; D003625:Data Collection / Q000379:methods; D006306:Health Surveys / Q000379:methods*; D006801:Humans; D010865:Pilot Projects; D013167:Spondylitis, Ankylosing / Q000191:economics / Q000453:epidemiology* / Q000628:therapy; D014852:Wales / Q000453:epidemiology
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