title: Protocol for a population-based ankylosing spondylitis (PAS) cohort in Wales.
abstract: 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.
authors.affiliation: School of Medicine, Swansea University, Singleton Park, Swansea SA2 8PP, UK. m.atkinson@swansea.ac.uk
authors.forename: Mark D
authors.initials: MD
authors.lastname: Atkinson
authors.forename: Sinead
authors.initials: S
authors.lastname: Brophy
authors.forename: Stefan
authors.initials: S
authors.lastname: Siebert
authors.forename: Mike B
authors.initials: MB
authors.lastname: Gravenor
authors.forename: Ceri
authors.initials: C
authors.lastname: Phillips
authors.forename: David V
authors.initials: DV
authors.lastname: Ford
authors.forename: Kerina H
authors.initials: KH
authors.lastname: Jones
authors.forename: Ronan A
authors.initials: RA
authors.lastname: Lyons
mesh_terms: 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
references.citation: J Rheumatol. 1994 Dec;21(12):2286-91
references.pmid: 7699630
references.citation: Scand J Rheumatol. 2007 Jan-Feb;36(1):14-21
references.pmid: 17454930
references.citation: Psychiatry Res. 1989 May;28(2):193-213
references.pmid: 2748771
references.citation: Rheumatology (Oxford). 2010 Apr;49(4):812-9
references.pmid: 20100797
references.citation: Nat Genet. 2007 Nov;39(11):1329-37
references.pmid: 17952073
references.citation: BMC Med Inform Decis Mak. 2009 Jan 16;9:3
references.pmid: 19149883
references.citation: Med Care. 2001 Jan;39(1):72-85
references.pmid: 11176545
references.citation: Br J Rheumatol. 1991 Oct;30(5):330-5
references.pmid: 1912998
references.citation: Lancet. 1999 Nov 13;354(9191):1687-90
references.pmid: 10568571
references.citation: BMC Public Health. 2010 Mar 23;10:150
references.pmid: 20331860
references.citation: Br J Rheumatol. 1997 Jul;36(7):766-71
references.pmid: 9255111
references.citation: BMJ. 2003 May 17;326(7398):1070
references.pmid: 12750210
references.citation: Prim Care Diabetes. 2009 Nov;3(4):245-8
references.pmid: 19604741
references.citation: Prim Care Diabetes. 2009 Aug;3(3):193-5
references.pmid: 19592320
references.citation: Joint Bone Spine. 2008 Jan;75(1):18-21
references.pmid: 17913549
references.citation: BMC Musculoskelet Disord. 2008 Jan 11;9:4
references.pmid: 18190710
references.citation: Acta Psychiatr Scand. 1983 Jun;67(6):361-70
references.pmid: 6880820
references.citation: J Rheumatol. 2004 Sep;31(9):1819-22
references.pmid: 15338506
references.citation: BMC Health Serv Res. 2009 Sep 04;9:157
references.pmid: 19732426
references.citation: Diabet Med. 2008 Nov;25(11):1354-7
references.pmid: 19046228
references.citation: J Rheumatol. 2000 Dec;27(12):2866-72
references.pmid: 11128678
references.citation: J Rheumatol. 2001 Dec;28(12):2667-73
references.pmid: 11764216
references.citation: Rheumatology (Oxford). 2010 May;49(5):929-32
references.pmid: 20123954
references.citation: Rheumatology (Oxford). 2008 Feb;47(2):132-7
references.pmid: 18037607
references.citation: Trials. 2010 Apr 15;11:39
references.pmid: 20398303
references.citation: J Rheumatol. 2001 Aug;28(8):1862-6
references.pmid: 11508591
references.citation: J Rheumatol. 2002 Jun;29(6):1236-43
references.pmid: 12064842
references.citation: Ann Rheum Dis. 2008 Jul;67(7):955-9
references.pmid: 17962239
references.citation: Br J Rheumatol. 1995 Aug;34(8):793-4
references.pmid: 7551671
references.citation: Ann Rheum Dis. 2002 Aug;61(8):693-9
references.pmid: 12117674
references.citation: Clin Exp Rheumatol. 2002 Nov-Dec;20(6 Suppl 28):S38-42
references.pmid: 12463445
references.citation: Health Qual Life Outcomes. 2003 Aug 01;1:29
references.pmid: 12914662
references.citation: World J Gastroenterol. 2010 Jan 28;16(4):431-8
references.pmid: 20101767
references.citation: Clin Exp Rheumatol. 2002 Nov-Dec;20(6 Suppl 28):S11-5
references.pmid: 12463440