The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry

TY - JOUR

T1 - The European Cystic Fibrosis Society Patient Registry

T2 - valuable lessons learned on how to sustain a disease registry

AU - Viviani, Laura

AU - Zolin, Anna

AU - Mehta, Anil

AU - Olesen, Hanne Vebert

PY - 2014/6/7

Y1 - 2014/6/7

N2 - Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries.

AB - Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries.

UR - https://www.scopus.com/record/display.uri?eid=2-s2.0-84903393482&origin=resultslist&sort=plf-f&src=s&st1=The+European+Cystic+Fibrosis+Society+Patient+Registry&st2=&sid=AE2460AE736435030897D07934E37930.euC1gMODexYlPkQec4u1Q%3a250&sot=b&sdt=b&sl=68&s=TITLE-ABS-KEY%28The+European+Cystic+Fibrosis+Society+Patient+Registry%29&relpos=12&citeCnt=6&searchTerm=

U2 - 10.1186/1750-1172-9-81

DO - 10.1186/1750-1172-9-81

M3 - Article

C2 - 24908055

SN - 1750-1172

VL - 9

JO - Orphanet Journal of Rare Diseases

JF - Orphanet Journal of Rare Diseases

M1 - 81

ER -