The how (and why) of disease registers

Anil Mehta

    Research output: Contribution to journalArticlepeer-review

    21 Citations (Scopus)


    A disease register is central to the understanding of clinical outcomes but the principles underpinning register design are not always apparent. My group developed, implemented and analysed outcomes using cystic fibrosis (CF) registers in Scotland (similar to 500 patients, 1992-1995), the UK (similar to 7000 patients, 1995-2006) and more recently across Europe (similar to 30 000 patients, 2006-2009). The key design principles are summarised and exemplified using the process required to add new diseases such as CF to neonatal screening programmes to illustrate pitfalls in the complex path from screening to timely entry into specialist CF care. The disciplines of screening and specialist CF disease therapy are very different and our findings may be relevant for the evaluation of the fragile links in the complex patient journey. Should these links fail, they have the potential to delay the entry of a screened baby into therapy after testing positive for a preventable disease. (C) 2010 Elsevier Ireland Ltd. All rights reserved.

    Original languageEnglish
    Pages (from-to)723-728
    Number of pages6
    JournalEarly Human Development
    Issue number11
    Publication statusPublished - Nov 2010


    • Database
    • Screening
    • Outcome
    • Register design
    • Audit
    • Rare disease
    • UK


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