2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
eYPAGnet - European Young Persons Advisory Groups Network |
|
| Existence of an identified contact person for external enquiries | Yes | |
| Existence of an internal steering committee | Yes | |
| Existence of an external advisory steering committee directing the reporting party | No | An external steering group will be appointed at a later date |
| Existence of a website | Yes | Within ICAN reserach organisation website |
| Existence of newsletter | No | |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | A register of YPAGS and patient groups that include children |
| Provisions to ascertain data protection and data security | No | no patient data is used |
| Procedures to access the database by third parties | No | n/a |
| Access to external databases/registries | No | |
| Standardised process to access an external database | No |