6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
conect4children - Collaborative Network for European Clinical Trials for Children (c4c) |
|
| Involvement of patients, parents or their organisations in the protocol design | Yes | Parent and young people’s involvement is a cross-cutting theme running through all (8) c4c work packages. The Patient and Public Involvement cross cutting team is made up of a consortium of experienced patient involvement facilitators of Young Person’s Advisory Groups (YPAGs), linked with the European Young Person’s Advisory Network (eYPAGnet), and patient organisations including Eurordis, VSOP, European Child and Adolescent Psychopharmcology Network (ECAPN) and European Foundation for the care of newborn infants (EFCNI).The team provide single point of access to support the active involvement of patients and families. |
| Involvement of patients, parents or their organisations in creating the protocol info package | Yes | Yes parents and young people have been involved in various tasks linked to c4c workpackages, including reviewing PPI plans within academic studies; informed consent and assent templates and development of educational resources. PPI is embedded into studies adopted by the network from identifying the research through to the dissemination of research findings. These processes are supported by the PPI cross-cutting team as are any requests for PPI support for future studies. |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | this is captured via c4c adopted studies |