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 | Coordinator SwissPedNet |
| Existence of an internal steering committee | Yes | SwissPedNet Board see also http://www.swisspednet.ch/about-us/organization/ |
| Existence of an external advisory steering committee directing the reporting party | Yes | SwissPedNet Advisory Board see also http://www.swisspednet.ch/about-us/organization/ |
| Existence of a website | Yes | www.swisspednet.ch |
| Existence of newsletter | No | |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | local registries available, disease specific, hosted by specialists of disease or condition |
| Provisions to ascertain data protection and data security | Yes | Data protection according to national law and regulations. |
| Procedures to access the database by third parties | Yes | via the owner of the registries |
| Access to external databases/registries | Yes | National databases are usually not publicly accessible. Paediatricians/researchers do have access upon request to e.g. epidemiological data, rare disease registries, etc. |
| Standardised process to access an external database | No | The process is handled by each data / registry owner. |