Epidemiology of CF: How registries can be used to advance our understanding of the CF population

J Cyst Fibros. 2018 May;17(3):297-305. doi: 10.1016/j.jcf.2017.11.013. Epub 2017 Dec 21.

Abstract

Cystic fibrosis (CF) registries work by bringing patient data together from specialist CF centres and accumulating data on a relatively rare condition over patients' lifetimes. In this review, we examine the origin of national CF registries, the use of registries for monitoring the health of the population, the power of conducting longitudinal analysis of registry data, knowledge gleaned from changing demographics, the evolving area of international comparisons of registries, strategies for sustaining registries and CF registries of the future. Examples of research undertaken using registry data and routinely reported CF registry statistics from across the world are provided. The application, utility and challenges facing CF registries in the future are discussed.

Keywords: Cystic fibrosis; Epidemiology; Patient registry; Registries.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Cystic Fibrosis / epidemiology*
  • Data Aggregation
  • Global Health
  • Humans
  • Registries / statistics & numerical data*