Child friendly and age-appropriate assent form for processing and sharing of personal data devoted to children (12-17 years) has been prepared by TEDDY Network.
The form was developed, within the European Joint Programme on Rare Disease (EJP RD), based on the consent form for parents for European Reference Networks Registries (ERNs).
The assent form was developed, with a participatory methodology, by involving the members of TEDDY KIDS (Kids Albania and KIDS Bari) and the participants of the first Paediatric Expert Training Workshop organized within the EJP RD.
An education session on relevant data protection principles and children rights was preliminary organised to increase the awareness of kids involved.
Kids were questioned about any improvements to the form, as the inclusion of visual information. They gave their feedback on the content and main relevant issues also underlining the need for increasing child-friendly tools and an effective information on this topic.