In recent years, the scientific community has increasingly recognized the importance of involving patients, their families, and patients’ associations in the projects we develop, especially in highly translational research where patients are at the core of our work. Engaging them allows us to understand their concerns and needs, ensuring that our projects or clinical protocols are better aligned with their real-life requirements, ultimately improving the success of scientific outcomes. Similarly, it is also essential to communicate and disseminate scientific results to them in a clear and simple way, for example, through workshops or conferences specifically designed for patients. These events help people feel more involved in projects and allow them to learn about their progress in detail, making science more transparent, accessible, and understandable at all levels of society.

For these reasons, in our BETTER project, communicating and disseminating the project and its results at all levels is one of the main pillars. In line with this, Dr. Gema García (leader of Use Case 2, focused on Inherited Retinal Dystrophies) was invited to participate in the International Retina Murcia Congress held in October 2024. The Retina Murcia Congress is organized by the patient association Retina Murcia (RETIMUR), began in 2013 as regional sessions and evolved into an international congress in 2018. This event brings together patients, researchers, and students to address advancements in the diagnosis, treatment, and research of visual diseases. Gema participated in a roundtable discussion to emphasize the importance of European funding to advance research on rare diseases, particularly retinal diseases, and to explain the main objectives of the BETTER project to the participants.

We are getting back into work after a well deserved holiday.

In 2024 we got the BETTER Project off to a great start, both on the technical side and the communication side.

• Technical progress: The PADME software has been deployed among partners and the next step is to have it deployed at the clinical sites. A lot of work has also gone into data FAIRication and data handling, in order to work across institutions and have the same data structure regarding the same research topic.
• Webinars: We have hosted our first webinars to explore the subjects of federated learning and researching rare diseases. Events & Conferences: We have been to several events and conferences, which has lead us to new insights and exciting collaborations.

With such a great year in 2024, our goals for 2025 is first and foremost to continue what we have successfully started, and then we keep on keeping on!

• We have plenty of exciting techical developments planned for 2025: Our Use Case workshop at Terrassa in November was a great success and allowed us to plan our next technical steps in-person. In 2025 we are focusing on practical results moving the project from theory into practice!
• And we also have more dissemination and communications activities in the pipe line: Webinars, academic papers, work shops, and events.

It’s both productive and rewarding to work together with so many different people across country borders and expertises! We are appreciative for the EU HORIZON projects for giving us this opportunity!

All in all, 2024 was a great and productive year, and we believe that 2025 will be even better!

Tech provider with a background as a biologist, and now director at the AI and IT development company Noosware. Stratos Arampatzis is an important part of the BETTER Project with both his own knowledge and experience along with the rest of the team at Noosware.

Watch his interview to hear more about Stratos’s role, his motivation and expectations for the BETTER project.

On December 17, 2024, from 10:00 to 12:30 (CEST), the SHIFT-HUB Project will host its Open Innovation Workshop, which aims to create opportunities for smart health researchers, innovators and startup entrepreneurs to collaborate and access public funding support.

We are happy to share that the BETTER Project is on the agenda:

"The Horizon Europe BETTER project: brief remarks on a success story"

· Dr. Matteo Bregonzio, Datrix SpA
· Dr. Pietro Pinoli & Dr. Anna Bernansconi, Politecnico di Milano
· Dr. Ana Grönke, University Hospital Cologne

We are excited to hear and see it!

Lear more about the event, visit:
https://shift-hub-open-innovation-workshop-dissecting-the.e-health.partnerall.eu/

Leader of work package 4, Senior Assistant Professor at the Department of Electronics, Information and Bioengineering at the Politecnico di Milano. Pietro Pinoli’s broad research interests encompass bioinformatics and computational biology, database and data management, big data technology and algorithms, machine learning and natural language processing. He has authored more than 70 peer reviewed articles in Journals, Conferences and Books. We are happy to have him onboard the BETTER Project!


Watch his interview to hear more about Pietro Pinoli’s role, his motivation and expectations for the BETTER project.