The EpiCom Survey-Registries Across Europe, Epidemiological Research and Beyond

被引:5
作者
Gordon, Hannah [1 ]
Langholz, Ebbe [2 ]
机构
[1] Royal London Hosp, Dept Gastroenterol, Whitechapel Rd, London E1 1BB, England
[2] Gentofte & Herlev Hosp, Gastroenterol Sect, Dept C, Copenhagen, Denmark
关键词
INFLAMMATORY-BOWEL-DISEASE; ECCO-EPICOM; INCEPTION COHORT;
D O I
10.1093/ecco-jcc/jjx013
中图分类号
R57 [消化系及腹部疾病];
学科分类号
摘要
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.
引用
收藏
页码:1019 / 1021
页数:3
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