A United Kingdom inflammatory bowel disease database: making the effort worthwhile

Inflammatory bowel disease (IBD), a paradigm of chronic illness, requires for its safe clinical management ready access to complete information, not always possible using paper records. To develop an IBD database (DB) for both individual patient management and collating information across centres. A...

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Veröffentlicht in:Journal of Crohn's and colitis 2010-10, Vol.4 (4), p.405-412
Hauptverfasser: Bardhan, K D, Simmonds, N, Royston, C, Dhar, A, Edwards, C M
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container_end_page 412
container_issue 4
container_start_page 405
container_title Journal of Crohn's and colitis
container_volume 4
creator Bardhan, K D
Simmonds, N
Royston, C
Dhar, A
Edwards, C M
description Inflammatory bowel disease (IBD), a paradigm of chronic illness, requires for its safe clinical management ready access to complete information, not always possible using paper records. To develop an IBD database (DB) for both individual patient management and collating information across centres. Access® based, with a minimum dataset. Prospectively collected data for 11,432 patients from 21 centres. PROFILE DIAGNOSIS: Ulcerative colitis (UC) 56%, Crohn's disease (CD) 40%, indeterminate colitis 4%. M:F ratio: UC 1.08:1, CD 0.72:1. Median age at diagnosis: UC 39, CD 30 years. Operated: UC 16%, CD 47%. Thiopurine use: UC 16%, CD 29%. IBD related mortality: 0.74%. A snapshot of this large IBD cohort shows the disease profile across the UK is similar to other large series. Unexpected gaps, sometimes large emerged (e.g. data on smoking and immunosuppression) highlighting the need for clear definition, consistency and completeness of data collection. Clinical management is made easier by the 'at a glance' summary, automated clinic letters, and facility for monitoring and audit, but the time required limited its 'real-time' use. Our experience shows it is possible to collect data from centres across the country which truly reflects clinical practice. We have learned as much from the process itself as from the data, principally, information needs to be well defined, validated at entry, and updated at every visit, a time consuming sequence which we had underestimated. Our lessons learned may help inform the development of a national database, and support national IBD standards and audit.
doi_str_mv 10.1016/j.crohns.2010.01.003
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source MEDLINE; Oxford University Press Journals All Titles (1996-Current)
subjects Colectomy
Colitis - drug therapy
Colitis - epidemiology
Colitis - surgery
Colitis - therapy
Colitis, Ulcerative - epidemiology
Colitis, Ulcerative - therapy
Crohn Disease - drug therapy
Crohn Disease - epidemiology
Crohn Disease - surgery
Crohn Disease - therapy
Data Collection
Databases, Factual
Humans
Immunosuppressive Agents - therapeutic use
Inflammatory Bowel Diseases - drug therapy
Inflammatory Bowel Diseases - epidemiology
Inflammatory Bowel Diseases - surgery
Inflammatory Bowel Diseases - therapy
Severity of Illness Index
United Kingdom - epidemiology
title A United Kingdom inflammatory bowel disease database: making the effort worthwhile
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