Cattedra: Lifelong collection of data, research, and collaboration lead to better care
"To reach actionable results, a lifelong approach to data collection is key," said Prof. Dr. Andrea Taddio, MD from the Institute of Child and Maternal Health – IRCCS “Burlo Garofolo” in Trieste, Italy when talking about the Cattedra project.
At the second webinar of the Better webinar series "openEHR: Bringing theory to life", we hosted Prof. Dr. Andrea Taddio, MD, a renowned pediatrician and professor, specialising in pediatric rheumatology. He shared with us his experience with using Better digital health platform and openEHR standard for setting up four registries for improving the therapeutic methodologies and diagnostic possibilities of rare diseases in children in the cross-border Cattedra project.
The Cattedra project brought together the children’s hospital IRCCS Burlo Garofolo in Trieste, Italy, and the paediatrics department at the University Medical Centre Ljubljana in Slovenia (UMCL). The registries helped the two hospitals exchange data, strengthened collaboration between the two hospitals, and increased knowledge about juvenile autoimmune diseases in the neighbouring regions.
In the webinar, Prof. Dr. Taddio said that collaboration between hospitals and research centres improves clinical and diagnostic tools for all. "One really important thing that the project brought, was to share the clinical information of the patients between referral centers of the area in order to improve the knowledge about the rare diseases, their clinical manifestations, their outcomes, and their treatment," said Prof. Dr. Taddio.
The role of Better in the project was to build the clinical and laboratory database with the aim to share the patients' information, clinical manifestations, treatment strategies, and disease outcomes. This information is widely available to all the clinicians, physicians, and researchers, working in the area. "These tools are very important for our everyday clinical activity as it is now easier for physicians to follow the information," Prof. Dr. Taddio said and added that by having their tasks automated, clinicians can focus more on research and patients.
For now, the Cattedra project, which is set to continue in both hospitals and hopefully even wider, brought four clinical registries in one application, 33 templates and forms were created, more than 150 patients were enrolled in both hospitals, and they already tested more than 30 samples for the purpose. Also, 6 new archetypes will be shared with the openEHR community and ready to use also elsewhere.