The conect4children (c4c) project aims to raise awareness and support the involvement of patients, families, children and young people in pediatric clinical trials.
The c4c project has an innovative approach in the development of the Pediatric Clinical Research, as the involvement of patients, families/caregivers regarding clinical trials design and implementation is prioritized.
What do we mean by involvement? Why should we involve children, young patients and families?
Historically children and young patients (CYP) have been excluded from clinical research as some consider them a vulnerable group that require protection, but recent arguments have shifted and advocates for CYP inclusion believe that they have the right to the highest standards of health care, to be informed, express their views and influence decisions made about them and that impact their lives.
This has led to CYP being directly engaged in matters that concern them as opposed to relying on parents or legal guardians to represent them, and a change in emphasis from research on CYP to research with CYP.
CYP and family involvement can be implemented throughout different stages of the research pathway.
Listening to patient and family views and taking into account their perspectives leads to high quality research, better accrual and retention rates in clinical trials, and improved outcomes for CYP. This is beneficial to both the community of medicine developers and patients.
In line with this c4c approach, the STAND4Kids National Hub supports the involvement of CYP in paediatric clinical research. Our pediatric network has also been actively involved in the support to the the creation and promotion of the ongoing activities of YPAG Lisboa. The YPAG Lisboa is a Young Persons Advisory Group, coordinated by Professora Helena Fonseca (Faculty of Medicine, University of Lisbon).
c4c provides a set of materials on the importance of involving families, children and young people in the development of pediatric clinical trials.
c4c has set up a database to gather information on patients, caregivers, patients’ organizations and/or YPAGs (Young Person’s advisory boards) of rare/pediatric diseases willing to act as experts providing advice when required. As a member of this pool of patient/YPAG representatives, participants are offered the proper training and information regarding their involvement in the proposed activities when necessary.
If you would like more information about some examples of organizations dedicated to Public Patient Involvement, here are some links you can check out:
[eYPAGnet– European YPAG Network]
