Building registries is hard, how can we make it even harder?

Alfaar, A. (2022).  Building registries is hard, how can we make it even harder?. Kongress der Deutschen Ophthalmologischen Gesellschaft [The Congress of the German Ophthalmological Society]. S215 - S215.

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Registries resemble a systematic way of collecting data for a specific theme or a population. As well-built registries represent a wealth of information for scientists, huge investments are paid to ensure their quality. The quality of the data gathered depends on a rigorous process of data validation and updating and, the comprehensiveness of the sources providing the data. Therefore, the data release may take years after the data collection. The advancement in information and computer technologies has helped in the progress of building better disease registries. In the process of learning from experiences in building registries, we aim in this presentation at discussing the lessons learned from building cancer (and other diseases) registries in different setups to facilitate building better ophthalmological registries. Moreover, to discuss the most common mistakes that lead to delayed collection and publishing of the data.



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