2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
Pedmed-NL - Medicines for Children Research Network Netherlands |
|
| Existence of an identified contact person for external enquiries | Yes | Marloes Jonkers to be contacted by the general email address: info@pedmed.nl |
| Existence of an internal steering committee | No | |
| Existence of an external advisory steering committee directing the reporting party | Yes | We have created an external advisory board, consisting of three highly appreciated persons in the field that are not involved in the development of the network or in c4c, in order to create an independent board. The selection proces has been discussion during the regular TCs, as well as the selected board members. This information is shared in (the minutes of) the regular meeting and on the website. |
| Existence of a website | Yes | www.pedmed.nl |
| Existence of newsletter | Yes | News for the general public is published in the 'News' section of the website. Internal newsletters are sent via email to consortium members. |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | Contact database, in order to reach the suitable contacts upon feasibility requests a.o. , based on expertise. When needed, we use distributed databases and registries available within the centres and/or specialty areas in our network |
| Provisions to ascertain data protection and data security | Yes | We work in compliance with ICH-GCP and all other (inter)national legislation and guidelines |
| Procedures to access the database by third parties | No | Third parties do not have access to the database. |
| Access to external databases/registries | No | We do not have access to external databases directly, but we can submit requests to the Dutch Pediatric Society to contact subspecialty subgroups and/or individual care-givers. In addition, we have contacts in several specialty networks that might provide access (after CDA is signed). |
| Standardised process to access an external database | No |