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Description
The current medical records systems in Poland lead to patients potentially being at risk of receiving ineffective treatment or treatment with adverse events, without well-timed assessment and correction, resulting in lost resources, reduced quality of treatment and hampered administrative management of the important endpoints in relation to healthcare. Therefore the principal objective of POLNOR-RHEUMA is to improve (1) patient care, (2) health outcomes, and (3) rheumatology research in Poland. To adress these challanges the POLNOR-RHEUMA Project will design, deliver and implement a structured patient medical record system for both daily clinical care and for collecting national, high-quality registry data in one workflow. The primary benefitiar would be rheumatic patients since the project aims at improving the quality of care, reducing health inequalities by implementing standardised medical follow-ups for patients with rheumatic diseases combined with the T2T in the clinic, along with exploring the epidemiology of JIA and adult arthritis disorders by systematic and longitudinal monitoring of important disease parameters. The secondary beneficiary side would be a scientific commnity of rheumatology at Jagiellonian University as the project aims at developing new pathways of research including co-operation with Norway partner. The added value of partnership is to be: (1) introducing a new approache for colleting and analyzing medical data in Jagiellonian University Rheumatology Department which is already used in Norway, (2) adopting in Poland a know-how in building patients database and imroving health care in long run perspective with ultimate construction of local and country registry for real world evidence and (3) polish IIT partner (KABMU) would gain neccessary know-how and experience in database building and data management with co-operation with norwegian IIT (DiagraphIT)
Summary of project results
The POLNOR-RHEUMA project was initiated to address critical gaps in rheumatology care and research in Poland. With a rising prevalence of rheumatic diseases and limited resources for comprehensive patient monitoring and data collection, there was an urgent need for innovative solutions to improve patient outcomes and advance research capabilities.
The project implemented key activities:
-Establishment of a comprehensive patient database and biobank with over 1200 patients and 10,000+ serum samples.
-Implementation and adaptation of the GoTreatIT (GTI) software across multiple Polish rheumatology centres.
-Development of a Patient Reported Outcome Measures (PROMs) system.
-Creation of a mouse model for anti-VEGFA therapy in spondyloarthritis.
-Development of infrastructure for a national rheumatology registry.
These activities were crucial for standardizing patient care, facilitating data-driven decision-making, and creating a robust platform for future research
The project has produced substantial progress towards its objectives of developing new and improved health services that align with national quality registers in rheumatology. A novel, cloud-based Arthritis Registry Application representing a significant advancement in rheumatology data management in general. This technology seamlessly integrates with the GoTreatIT software used in daily clinical practice, enabling automatic, structured data collection across multiple centres. In this way, the working time of the associated personnel can be optimized, and any unnecessary duplication of the resources can be avoided.
Summary of bilateral results
With a wisely selected partnership, the proposal obtained funds and the project team successfully executed this project. With the mutual engagements and efforts put in by both partners to share knowledge, experience, and infrastructure, the project was feasible. An example is the milestone reached in 2024. The installation of GoTreatIT at the University Children''s Hospital in Krakow resulted from strategic partnership realignment. The medical staff underwent comprehensive training, enabling easier patient recruitment and data collection. Successful partnership between Polish and Norwegian institutions has created a model for future alliances.