TY - JOUR
T1 - The EpiCom Survey
T2 - Registries Across Europe, Epidemiological Research and Beyond
AU - Gordon, Hannah
AU - Langholz, Ebbe
N1 - Copyright © 2017 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: [email protected].
PY - 2017/8/1
Y1 - 2017/8/1
N2 - The 2015 EpiCom survey evaluated population, patient, and research registries across Europe. Information was collected from 38 countries. The registries included those falling within the remit of national statistics, hospital databases, twin and multiplex registries, inflammatory bowel disease [IBD] registries and biobanks, and cancer and surgical registries. The scale and nature of registries were investigated, and where possible a contact detail for each registry was obtained.The survey demonstrated 33 birth and death registers across Europe. It also highlighted ethical and legal challenges in linking information from health and social registries: 30 delegates reported that their home country has a hospital database; 21 have adverse events registers, although the majority only mandate reporting of events that occur during drug trials; 17 countries have twin registries; And IBD registries have been established in 19 countries, with 15 countries having a biobank with IBD samples. The cancer registries were the most complete and consistent.Despite heterogeneity between countries, the registries represent an invaluable source of information for future IBD research. Supplementary material [available at ECCO-JCC online] depicts active registries in each of the participating countries.
AB - The 2015 EpiCom survey evaluated population, patient, and research registries across Europe. Information was collected from 38 countries. The registries included those falling within the remit of national statistics, hospital databases, twin and multiplex registries, inflammatory bowel disease [IBD] registries and biobanks, and cancer and surgical registries. The scale and nature of registries were investigated, and where possible a contact detail for each registry was obtained.The survey demonstrated 33 birth and death registers across Europe. It also highlighted ethical and legal challenges in linking information from health and social registries: 30 delegates reported that their home country has a hospital database; 21 have adverse events registers, although the majority only mandate reporting of events that occur during drug trials; 17 countries have twin registries; And IBD registries have been established in 19 countries, with 15 countries having a biobank with IBD samples. The cancer registries were the most complete and consistent.Despite heterogeneity between countries, the registries represent an invaluable source of information for future IBD research. Supplementary material [available at ECCO-JCC online] depicts active registries in each of the participating countries.
U2 - 10.1093/ecco-jcc/jjx013
DO - 10.1093/ecco-jcc/jjx013
M3 - Journal article
C2 - 28158624
SN - 1873-9946
VL - 11
SP - 1019
EP - 1021
JO - Journal of Crohn's and Colitis
JF - Journal of Crohn's and Colitis
IS - 8
ER -
