Purpose: This study describes the establishment of the first electronic cystic fibrosis (CF) registry, analyzing the demographic and clinical data of Jordanian patients registered with CF.Methods: The CF registry steering committee, a collaborative group of stakeholders across Jordan interested in CF, defined the objectives and multi-step process. They identified data sources from hospitals and healthcare facilities, and developed a standardized data collection tool tailored to the Jordanian health system. Ethical approval and patient consent were secured, and data collectors were trained. Data collection began with compiling records from all health sectors, identifying and removing duplicates, and excluding deceased patients. Medical record reviews and patient interviews further refined the data set. A validation process ensured data accuracy, and statistical analysis was performed using Stata software.Results: The 385 documented and confirmed cases of CF in Jordan were mainly concentrated in Amman (35.3%), Irbid (26%), and Zarqa (8.6%). The data showed that 63.6% of patients were under the age of 20, and 56.6% were males. A reported sweat chloride level was available for 52.7% of the patients, while genotyping results were available for 15.1%. Pulmonary function test (PFT) results were available for (9.0%). Treatments predominantly included inhaled bronchodilators (59%), macrolide antibiotics (55.6%), inhaled antibiotics (36.4%), and enzyme replacement (75.3%).Conclusion: The establishment of Jordan's CF registry offers insights into the CF population, though challenges in data standardization and completeness persist. Enhanced efforts in data collection accuracy and comprehensive documentation are essential for the registry's continued development and monitoring changes in outcomes.Keywords: Jordan; cystic fibrosis; data analysis; genotyping; mutation; national registry.
Purpose: This study describes the establishment of the first electronic cystic fibrosis (CF) registry, analyzing the demographic and clinical data of Jordanian patients registered with CF.
Methods: The CF registry steering committee, a collaborative group of stakeholders across Jordan interested in CF, defined the objectives and multi-step process. They identified data sources from hospitals and healthcare facilities, and developed a standardized data collection tool tailored to the Jordanian health system. Ethical approval and patient consent were secured, and data collectors were trained. Data collection began with compiling records from all health sectors, identifying and removing duplicates, and excluding deceased patients. Medical record reviews and patient interviews further refined the data set. A validation process ensured data accuracy, and statistical analysis was performed using Stata software.
Results: The 385 documented and confirmed cases of CF in Jordan were mainly concentrated in Amman (35.3%), Irbid (26%), and Zarqa (8.6%). The data showed that 63.6% of patients were under the age of 20, and 56.6% were males. A reported sweat chloride level was available for 52.7% of the patients, while genotyping results were available for 15.1%. Pulmonary function test (PFT) results were available for (9.0%). Treatments predominantly included inhaled bronchodilators (59%), macrolide antibiotics (55.6%), inhaled antibiotics (36.4%), and enzyme replacement (75.3%).
Conclusion: The establishment of Jordan's CF registry offers insights into the CF population, though challenges in data standardization and completeness persist. Enhanced efforts in data collection accuracy and comprehensive documentation are essential for the registry's continued development and monitoring changes in outcomes.
Keywords: Jordan; cystic fibrosis; data analysis; genotyping; mutation; national registry.