ECFSPR team visits Vertex headquarters in Boston

Members of the ECFSPR team visited Vertex Pharmaceuticals’ headquarters in Boston to exchange perspectives on registry data and the importance of data quality.

The visit provided an opportunity to raise awareness of the Registry’s work and the contribution of its data to cystic fibrosis research. For the ECFSPR, dialogue with those who use registry evidence is valuable: it helps communicate the strengths and limitations of the data and understand the questions they can help address.

Data quality is central to this work. Together with participating countries and centres, the ECFSPR works to improve the completeness, accuracy and timeliness of the information collected. These efforts underpin reliable analyses and support the use of registry findings in research and quality improvement.

Exchanges like this offer space to share experience and consider how registry data can be better understood and used, with the ultimate aim of improving care for people with cystic fibrosis.

The ECFSPR team thanks Vertex for hosting the visit and for the opportunity to exchange perspectives.