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

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. Using a modern and global platform, we developed a REDCap-based data collection and reporting system. Emphasis was on ease of measurement, time to completion, and availability of personnel to collect information. The focus was on tracking outcomes of patients and processes of center performance and practice. Institutional approval and patient consent were obtained. Patient confidentiality and data protection met current standards. The platform encompassed 7 forms and 241 fields and included a testing environment. Two CF centers (C1, Peds; C2, Adult) tested the platform. C1: 85/86 patients enrolled since June 2022. C2: 30/42 since Dec 2022. Detailed “information they can use” is highlighted by C1’s info on pulmonary exacerbation (PEx). Of 504 outpatient encounters, 176 were diagnosed with PEx (83% mild, 16% moderate, 0.5% severe). PEx was managed with oral (83%), inhaled (6%), or home IV (0.6%) antibiotics, increased ACT (14%), and hospitalization (11%). Active use of the platform allowed C1 to rapidly and accurately report the highest percentage of eligible patients on CFTR modulators in the country (Argentina). The registry solution tested is a versatile, functional, and valuable tool for managing patients, improving center performance, and reporting to health agencies.