Promoting patient-centred research
The INVENTS project is driving forward innovation in rare diseases research by developing innovative study designs, extrapolation techniques, simulation methods, and evidence-based tools. The TEDDY Network has been actively involved, contributing with its expertise in ethical and regulatory matters and establishing an advisory paediatric Patient Expert Group (PEG) to ensure young patients’ voices are heard and considered in decision-making processes.
The PEG kicked off with a two-day face-to-face intensive training course designed specifically for paediatric patients, focusing on the scientific and methodological foundations of the project. Following this, the group has participated in six monthly online sessions (from January to June), where leading experts have provided deeper insights into clinical trial methodological, ethical and regulatory aspects, data extrapolation, and simulation strategies tailored to rare diseases. These educational efforts aim to empower adolescents living with chronic conditions such as Juvenile Idiopathic Arthritis (JIA) and Multiple Sclerosis (MS), keeping them informed about the latest advancements in biomedical research.
By fostering a collaborative environment between young patients and healthcare professionals, INVENTS promotes more inclusive, patient-centred research approaches that could transform the development of treatments for rare diseases.