Establishing the minimum requirements for cystic fibrosis registry system

Abstract

Abstract Background: national registries of CF have been set up toward providing an integrated resource for improving patient care and conducting research on the disease. Aim: this research was to determine minimum requirements for the CF registry in north-west of Iran. Material and Methods: Data items collected by several selected registries of cystic fibrosis were studied and an initial set of data was selected by the researchers. Then a group of experts were asked to review the proposed data elements and minimum data set was finalized. Availability of data was evaluated through reviewing medical records of 144 patients hospitalized in Children Hospital located in Tabriz. Workflow and data flow required for the registry system was determined through comparative study of the registry processes of the selected countries and finalized through conducting several interviews with the related experts. Results: Six classes of data were established for the registry including patient demographics, administrative data, survival status, diagnostic procedures, genetic and clinical manifestation, and therapeutics. Thirty one data elements were selected as the minimum data set for CF registry system. Availability of data in administrative category and survival status was 100 %. Collecting data on medication was feasible in 100 % of the cases. In the category of the demographic data, accessibility of patient name, age, and gender, place of birth and date of birth was 100 percent. In group of diagnostic procedures, partial availability of data was observed for sweat test (44.44%) and genetic test (29.16%). Workflow and its related data flow for the registry was depicted in detail by using the activity diagram of the UML. Conclusion:. Minimum requirement determined in this work can be useful in designing electronic registry for those suffering from CF toward integration of their fragmented records across continuum of the health care system in order to improve quality of shared care for these patients.