Pediatric Rheumatology Online Journal → August 2003 → Health-Care Delivery → Abstract #178

AN INTERNET-BASED PEDIATRIC RHEUMATOLOGY REGISTRY: A NOVEL CONCEPT OF MULTICENTER DATA COLLECTION - THE ISRAELI EXPERIENCE

P. J. Hashkes,1,2 P. Navon,2 S. Padeh,2 M. Mukamel,2 R. Brik,2 J. Press,2 J. Barash,2 T. Tauber,2 M. Rubenstein, Y. Uziel.2

1Pediatric Rheumatology Service, Sieff and Poriya Hospitals, Galilee, Israel; 2Pediatric Rheumatology Study Group, Israel

Background: Pediatric rheumatology registries exist in several countries. Registries help obtain epidemiologic data, facilitate multicenter research, and assist in estimating resources needed to treat children with rheumatic conditions. The data collection process for most registries is cumbersome; paper based, dependent on mail transmission, and needing additional personnel to enter the data into a computer. Results are not readily available to researchers. To make this process more efficient we developed a internet-based national pediatric rheumatology registry.
Objective: To demonstrate the methodology of the Israeli internet-based pediatric rheumatology registry.
Methods and Results: In March 2001, we established an internet-based registry with the participation of all pediatric rheumatologists throughout Israel. Data is entered on each new patient with rheumatic disease. The data is entered on each physician's PC and includes demographic data, referral source, rheumatologic diagnoses, drug and outcome data. Most data is entered by opening windows and mouse clicking and takes 1 minute to complete. Mechanisms exists to detect double entries and patients seen by other pediatric rheumatologists. Privacy is ensured by password entry, firewalls and lack of direct identifying features. The data is automatically analyzed and updated for each physician's practice and for national statistics. Since the registry's establishment over 2800 patients have been entered, including 600 with various types of chronic arthritis, ~100 with SLE and ~100 with other connective tissue diseases. Two research projects are underway utilizing the database. All physicians note the ease of use and useful data generated for their practice.
Conclusions: We have demonstrated the feasibility and utility of using the web for establishing a national registry. This model can be used as a template for other registries which may serve research purposes.