The voices of children, young people and families are a pivotal part of the innovative approach of c4c. The project places patients at the centre and assigns them an active role in the development of the different clinical trials that are going to be conducted by conect4children.
In the coming months, patients, parents and YPAGs will be involved in different kind of activities:
- participation in panels to review specific sections of the protocol;
- assessment of patient documentation;
- discussions on paediatric unmet needs in multi-stakeholder meetings.
In order to guarantee that patients and their carers are effectively involved on the basis of their health conditions and personal experiences, we have setup a database to gather information on:
- the medical condition in which they are interested;
- membership of a patients organization;
- previous expertise in the engagement of patients in drug development;
- preferred methodology of involvement: face-to-face or online.
As a member of this pool of patient/YPAG experts, participants will be offered the proper training and information regarding their involvement in c4c activities. To request membership to the group of c4c expert patients, please fill in the form below.