6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
TEDDY - European Network of Excellence for Paediatric Research |
|
| Involvement of patients, parents or their organisations in the protocol design | Yes | Protocols contents and procedures are shared with patients associations. Of note, one of TEDDY members is a Patients Confederation (Childhood Cancer International). |
| Involvement of patients, parents or their organisations in creating the protocol info package | Yes | Patients and families are involved in the preparation of information packages for patients and parents (videos, leaflets, etc.) also through the organisation of focus groups. TEDDY is also investigating the possibility to establish an Italian YPAG (Young Persons Advisory Group) to be involved in the design of pediatric studies and in the preparation of consent/assent forms. |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | Patients and their organisations are involved in the definition of therapeutic needs. |