The integration of data from various healthcare centers into disease registries is pivotal for facilitating collaborative research and enhancing clinical insights. In this study, we investigate the integration process of existing registries into the PVRI GoDeep meta-registry, focusing on the complexities and challenges encountered. We detail the integration process, including data transformation, mapping updates, and feedback mechanisms. Our findings underscore the importance of standardized processes and proactive communication in addressing data quality issues, ultimately enhancing the reliability and trustworthiness of meta-registry data. Through careful harmonization of the data and transparent documentation of data processing, we pave the way for leveraging registry data to drive advancements in pulmonary hypertension research and patient care.
- Fuenderich, M. T.
- Krieb, P.
- Seeger, W.
- Majeed, R. W.
Keywords
- *Registries
- *Hypertension, Pulmonary
- Humans
- Meta-registry
- data integration
- data mapping
- data quality
