Abstract

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, IBD Registries and Biobanks and Cancer and Surgical Registries. The scale and nature of registries was 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. 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. Online supplementary material depicts active registries in each of the participating countries.

Supplementary data