Skip to main page content
Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
, 17 (3), 297-305

Epidemiology of CF: How Registries Can Be Used to Advance Our Understanding of the CF Population

Affiliations
Review

Epidemiology of CF: How Registries Can Be Used to Advance Our Understanding of the CF Population

Abaigeal D Jackson et al. J Cyst Fibros.

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.

Similar articles

See all similar articles

Cited by 11 articles

See all "Cited by" articles

Publication types

LinkOut - more resources

Feedback