Engagement of people living with T1D and their families
03. April 2019
Partners of INNODIA are accountable for a growing number of high level, collaborative papers, in our strive to discover novel biomarkers for T1D and achieving a better understanding of the pathogenesis of the disease, thus leading to a path for prevention and cure. In the last year alone, over 25 scientific publications were delivered. A special feature of INNODIA is that we report our research not only in the highest ranking biomedical scientific journals, but we also translate the findings of this research, its significance and potential impact, to people living with T1D and the general public, through a collaboration between the basic, translational and clinical scientists and our INNODIA patient advisory committee (PAC). This is achieved through lay newsletters, transcribing of interesting publications, but also through the organization of local patient days and postings on our website www.INNODIA.eu or via our twitter account (@innodiagroup).
An important reason for the success of INNODIA, is the fact that we strongly encourage involvement of people living with T1D and their families, prioritizing the needs of the main stakeholder. The very active PAC is an example of that. This group, existing of eight people living with T1D (and parents), is very committed to keep INNODIA stakeholders as well as the families engaged in the project. In the last year, PAC members have visited four clinical centers to meet the staff as well as potential or current participants in INNODIA. During one of these visits in Helsinki, a new video was made with the help of a participant, who showed how to perform a dry blood spot, one of the procedures study participants need to perform at home. Visits of the PAC are always followed with an increased recruitment rate in the centers, showing how motivating this is to our partners. For the younger participants, the PAC has created a cartoon-hero: Delta, which now has an animation video in different languages as well as an interactive booklet that has won second place in the competition for the ‘Best communication Product in IMI projects’.