6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
PIBD-Net - Pediatric Inflammatory Diseases Network |
|
| Involvement of patients, parents or their organisations in the protocol design | Yes | The current project PIBDSetQuality is based on close interaction with DCCV (German charity) and AFA (French charity). A representative of the charity is present during the protocol writing meetings and receive for information the last version. |
| Involvement of patients, parents or their organisations in creating the protocol info package | Yes | The organisation receive for information the patient’s documents and all remarks are taken into account ( e.g a critical point on the design of the study, an emotional approach to the study protocol, an opinion on the presentation of informed consent,…) |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | The organisation is informed of the new protocol idea. As the PIBD-Net’s protocols are not so many ( once every 3 years), there is no prioritisation needed. |