2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
c4c-S - conect4children Stichting |
|
| Existence of an identified contact person for external enquiries | Yes | email: c4c.admin@conect4children.eu |
| Existence of an internal steering committee | Yes | The c4c-S governance structure includes two corporate bodies and several internal groups. The two corporate bodies are the Management Board (MB); and the Supervisory Board. The Management Board is responsible for the management of the Foundation. The task of the Supervisory Board is to supervise the strategy of the Management Board and the general course of affairs in the Foundation and its affiliated organisations, and to assist and guide the Management Board with solicited or unsolicited advice. After the initial incorporation of the MB, the Supervisory Board appoints MB members. Further groups support the MB in its role. The Management Team includes service leads, designated by the MB; and a broader Executive Leadership Team including representatives from National Hubs through a National Hub Assembly, PPI facilitators, Expert Leads and other relevant internal stakeholders through an Expert and Education group. Each governance structure includes charters and rules of appointments; members for the MB/MT are publicly disclosed via the website, and the ELT is in the process of being appointed. |
| Existence of an external advisory steering committee directing the reporting party | Yes | A Stakeholder Advisory Committee comprised of representatives of Strategic Partners (Members) of the c4c-S and other stakeholder groups provides feedback and input focused on strategic aspects of the work of the c4c-S including the network and service offerings. |
| Existence of a website | Yes | https://conect4children.eu/#services%20_blank |
| Existence of newsletter | Yes | Electronic newsletter distributed to relevant stakeholders |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | Database of sites and disease areas where trials can be performed. Database includes contact details of trial staff. Sites profile is updated on a regular basis, by collaborating centers and national contacts/ National Hubs. Database of experts and [disease] area of expertise as well as contact details of the experts. Both databases are maintained by the network. |
| Provisions to ascertain data protection and data security | Yes | Access to information and databases is restricted and dependent on roles and responsibilities. All information is stored in a secure IT module. Policy on privacy has been developed within the project, and currently under revision to fit the new legal entity policies. |
| Procedures to access the database by third parties | Yes | Only third parties involved in providing the services have access on a need to basis to the databases. Contracts are established with third parties that are involved in providing the services. |
| Access to external databases/registries | No | c4c-S central team has no direct access to these kind of databases/registries, however via network members indirect access to some of them can be achieved. |
| Standardised process to access an external database | No |