2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
SwissPedNet - Swiss Research Network of Clinical Pediatric Hubs |
|
| Existence of an identified contact person for external enquiries | Yes | |
| Existence of an internal steering committee | Yes | according to bylaws - 3-6 members. Elected at General Assembly, communicated on website. |
| Existence of an external advisory steering committee directing the reporting party | Yes | Advisory Board members are selected by the board and listed on the website. |
| Existence of a website | Yes | www.swisspednet.ch |
| Existence of newsletter | No | No SwissPedNet newsletter. News are shared through the Newsletter of the Swiss Clinical Trial Organisation and the website. Internal newsletter goes to network members of SCTO and SwissPedNet, external newsletter is on subscription. |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | Database on site profiles available centrally, managed by the network. No individual patient data available. Specific experience of relevant research fields covered. DB is managed by the network. Several disease or population specific databases /registries available in Switzerland, managed by individual centres. |
| Provisions to ascertain data protection and data security | Yes | Data Protection Officer implemented at SwissPedNet. The DPO is overseeing all data protection aspects. Data protection declaration available on website. Individual centres have their own DPO. |
| Procedures to access the database by third parties | Yes | no access to third parties granted for site profile database. Access according to local SOPs for registries managed by centres or SwissPedRegistry. |
| Access to external databases/registries | Yes | Access according to local SOPs for registries managed by centres or SwissPedRegistry. |
| Standardised process to access an external database | Yes | Access according to local SOPs for registries managed by centres or SwissPedRegistry. |