P128 Successful deployment of a cystic fibrosis registry solution in a low-and-middle-income country – a pilot

Abstract

In many patient registries of lower-and middle-income countries (LMIC), information is scarce, and little CF outcome data is accessible at the center level. Current barriers to effective data management include cumbersome design and user interface, limited infrastructure and time for data entry, inconsistent field definitions, incomplete datasets, and lack of resources to develop and implement solutions. These factors prevent adoption, use, and sustainability of LMIC registries. We saw the need for a practical approach, and here report the successful pilot of a patient management and registry tool using a standard platform.