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

Abstract

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.