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IDEA-FAST Kick-Off Meeting

The project kick-off meeting was organised by Newcastle University and was held at the Newcastle United Football Club. Fai Ng and Fred Baribaud described the concept & approach for the project and strategies for identifying digital endpoints and presented the project implementation including governance structure, WPs and their interaction. Colm Carroll presented the role of IMI and he introduced several closely related IMI projects for potential collaboration and learning. Mike Jackson and Sofia Jacob introduced the project management and shared some organisational thoughts. Walter Mätzler and Virginia Parks shared clinical knowledge and insight and highlighted the main task for the next six months, which is the feasibility study and a secure electronic data capture system and patient-facing portal to support the study. Jan Smeddinck and Ioannis Pandis presented the digital devices and technology going to be used in the project. Mark van Gils and Andrew McCarthy described the device-specific data analysis and performance assessment Kai Sun and Ioannis Pandis demonstrated the data management strategy for clinical data and sensor measurements. The general data analytics package distinct from the device specific work was presented by Jérôme Kalifa. Laura Vieweg presented the clinical validation study organisation and management. The objectives of data protection, ethics and legal challenges were presented by Evert-Ben van Veen, including guidance and support for patient involvement. Daniel Schmidtmann presented the dissemination channels Website, Twitter and LinkedIn and Veli Stroetmann described the upcoming work on sustainability and exploitation, including regulatory questions relevant to the project.

A very big shout out goes to Cate, Christine, and Peter*, for representing the patients in this project and for sharing their story about living with a chronic disease. Cate gave us insight into her live with Crohn’s disease and chronic fatigue, Christine and Peter* shared their perspectives on Parkinson’s disease. *name changed