The study aims to test on a cohort of rare patients a digital innovative tool to support patients/parents in the informed consent and assent process and to keep up-to-date a lawful informed and dynamic consent and to use samples and data for research purposes. This will favour their engagement in clinical studies, a step which is well known to be very demanding, particularly in the rare diseases scenario, and stimulate a bidirectional dialogue between researchers and patients/parents/legal representatives.
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Test the usability of dynamic consent in a cohort of rare patients
Timeframe: From platform establishment, an average of 1 year