CONCERTO project: Bringing paediatric rare disease research to the next level

In an effort to revolutionise the diagnosis and treatment of rare immune-mediated diseases in children, Better, with its digital health platform, is a part of the cross-border CONCERTO project. The project will elevate paediatric rare disease research, focusing on harmonising clinical approaches and treatment strategies as well as disseminating the cross-border database.

The CONCERTO project, funded by the call 1/2022 of the INTERREG Programme Italy - Slovenia VI A 2021 – 2027, builds upon the achievements of its predecessor, the CATTEDRA project. The CATTEDRA project set up four registries to improve the therapeutic methodologies and diagnostic possibilities of rare immune-mediated inflammatory diseases in children and digitised essential forms, laying the groundwork for cross-border collaboration and data-driven insights essential to tackling rare diseases effectively.

The CONCERTO (CrossbOrder Network for ChildrEn RheumaTolOgy) project is now building on this success, as it intends to develop further a jointly produced database of paediatric patients suffering from immune-mediated rare diseases in the Programme area. The consortium of partners in the project include I.R.C.C.S. materno infantile Burlo Garofolo, Univerzitetni klinični center Ljubljana, Experteam srl, Università degli Studi di Trieste, Azienda Sanitaria Universitaria Friuli Centrale, and Better. The partners have agreed to refine the database, which is built on the Better digital health platform, to advance diagnostic tools, transfer the database, and thus drive progress in paediatric rare disease research.

By August 2025, the CONCERTO project will improve and expand the cross-border database of rare paediatric diseases and make it more user-friendly, also with a view to its possible transferability to other institutions. It will build an enhanced database of immune-mediated rare diseases in children and strengthen it with new data and new functions that will contribute to better clinical practice and research. The project then aims to open up the database and facilitate its transfer to partner institutions and dissemination to aid researchers, where it will be used as a tool for further research activities and scientific publications.

Once finished, all the outcomes of the CONCERTO project will empower clinicians and researchers from different environments to better understand and address rare paediatric diseases by streamlining data collection and analysis, ultimately improving patient outcomes and quality of life.

“We are very happy that we get to continue and elevate the results of the CATTEDRA project even further with the CONCERTO project. I think it stands as a testament to the power of collaboration in driving innovation and progress in paediatric rare disease research, and we can really see the important role technology plays in such research. An important component of the project is also the transfer of the database to other institutions, as it will only further the possibilities of developing new diagnostic tools for rare diseases in children,” said Jovan Pavićević, International Markets Director at Better.

Objectives of CONCERTO:

• Improving and expanding the cross-border database of rare paediatric diseases.
• Transferring the database to partner institutions.
• Disseminating the database to aid researchers.
• Enhancing feasibility studies for new diagnostic tools.