ICT Tools for Registry Research: A Market Survey.

ABSTRACT

Registries in health research are complex systems requiring a diverse infrastructure with information and communications technology tools (ICT tools) for manifold tasks. Those tools should support not only data management but also several core and accompanying processes. Recent trends in registry research also need to be taken into account. Thirty-five vendors, suppliers, and experts were included in a survey on ICT tools for registries and cohorts. Information from 28 tools was available for a preliminary analysis. In comparison to 2015 and 2018, coverage of core processes such as registry development or data analysis and utilization increased from below 40% to 39% and higher. Recording patient-reported information and linkage to other data collections was well covered. However, near-patient trends were less supported. The market offers a rich selection of commercial and non-commercial ICT tools for registry research. Due to the manifold offers available from the market, in-house developed software should be an absolute exception.