Better Platform used to set up registries for rare diseases for children in the area of pediatric rheumatology

4th May 2022

Better provided its Digital Health Platform to set up four registries for improving the therapeutic methodologies and diagnostic possibilities of rare immune-mediated inflammatory diseases in children in the EU-funded Cattedra project.

The Cattedra project is a cross-border cooperation between children’s hospital IRCCS Burlo Garofolo in Trieste and the paediatrics department at the University Medical Centre Ljubljana in Slovenia (UMCL), as well as three industry partners – Better, Cobik, and Experteam SRL. The international project is funded by the European Union (Interreg project) and aims to bring together clinical centers, research centers, and private companies.

The overall objective of the project is to bring together, share, and improve the therapeutic methodologies and diagnostic possibilities of rare diseases in children in the area of pediatric rheumatology. The project will strengthen collaboration between the two hospitals to increase knowledge about juvenile autoimmune diseases in neighbouring regions.

Better set up four different registries

Two registries were set up in the first phase for Juvenile Idiopathic Arthritis (JIA) and Juvenile Dermatomyositis (JDM). This involved digitalisation of 23 forms. The registries have been in production since August 2021.

The second and third phases were completed in March 2022. The second phase included setting up digital registries for additional two diseases: Systemic Lupus Erythematosus (SLE) and Auto-Inflammatory Disease (AID). The two registries included digitalisation of 9 different forms. Better has also developed additional forms that are not related to specific registries and include laboratory results, covid-19 survey, and medications.

In the third phase, Better created visuals of patient key clinical data for all 4 registries.

Better’s solution results in the collection, management, and use of data for two purposes:

• To support active patient monitoring and disease management to improve children’s health and overall quality of life.

• To become a research tool for everyday clinical practice and it will be used along with the clinical information system.

“Sharing clinical information is important to improve the healthcare of patients”

“Cattedra project gave us the opportunity to collect the clinical data of patients affected by immune rare diseases and to critically analyse them. Moreover, we also have the opportunity to study the Inflammatory clinical pathways in patients and it is an important area of study because the treatment option could be modified based on these results. Finally, sharing the clinical information with other clinical centres is also important to improve the healthcare of these patients,”

commented prof. dr. Andrea Taddio, MD, assistant professor at the Institute of Child and Maternal Health – IRCCS Burlo Garofolo, University of Trieste in Italy.

Prof. dr. Tadej Avčin, dr. med., Head of the Department of Allergology, Rheumatology, and Clinical Immunology, University Children’s Hospital, University Medical Center Ljubljana, added:

“Within the Cattedra project, together with the project partner Children’s Clinic in Trieste, we developed an electronic database for the most common rheumatic diseases in children. The collection includes monitoring of clinical, laboratory, and radiological data of patients and ongoing calculation of disease activity indicators and permanent damage due to disease. The long-term collection of this data will enable us to monitor the epidemiological indicators and the success of the treatment of our patients and the possibility of direct comparison with data from other reference paediatric rheumatology centers”.

“Better’s role in the Cattedra project was to deliver an e2e solution for clinical registries. Using the openEHR Better platform, we have delivered four clinical registries to bring together, share, and improve the therapeutic methodologies and diagnostic possibilities of rare diseases in children. We are proud to see the great collaboration between the paediatric hospitals in Slovenia and Italy, and are hoping that we will be able to expand this knowledge and sharing of important data even wider,”

said Tomaž Gornik, CEO and founder of Better.

Discover more about Better:

Better transforms healthcare organisations with Better Platform, their market-leading open data platform, the Better Meds electronic prescribing and medication administration solution, and Better’s low code Studio, which allows applications to be built rapidly at a fraction of the cost. The company’s solutions are putting organisations in control of their data, workflows, and transformation plans, all with the aim of simplifying the work of care teams and improving lives. Better has provided solutions to more than 150 clients across 16 countries, and Better Platform securely supports over 30 million patients.

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