Engagement of young patients in Orphan Medical Devices development
The past 5th of June, the OrphaDev4Kids Project held its second General Assembly. This event, hosted by one of the Project’s partners, the Medical University of Graz in Austria, counted with the presence of Project members and clinical experts that witnessed firsthand how young patient engagement is central to the OrphaDev4Kids project.
TEDDY play a central role in the OrphaDev4Kids project by leading young patients’ engagement in Orphan Medical Devices (MDs) development. TEDDY supported the formation of the Patients Expert Committee (PEC) and ensures young patients’ perspectives inform all project phases—from identifying unmet needs to guiding research and device feedback.
The PEC is composed of 17 members from seven different young person’s advisory groups (YPAGs), which brings a diverse perspective and advice on unmet needs for MDs development, particularly in highlighting specific needs, concerns, and priorities relevant to children and young people, helping identify gaps in current medical device solutions for paediatric care, contributing to the definition of priority areas for innovation, designing research activities and development plans of MDs by offering insights based on real-life experiences of young patients and their caregivers, fostering a patient-centred mindset in the development of paediatric MDs, ensuring that usability, comfort, and acceptability are taken into account and acting as a bridge between young patients and the scientific/clinical community, facilitating dialogue and improving the relevance and effectiveness of medical solutions.
The TEDDY Network and the PEC have been crucial in reviewing and refining the survey for patients with Congenital Cyanotic Hearth Disorder (CCHD), ensuring it comprehension and promoting a higher adherence rate.