2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
TEDDY - European Network of Excellence for Paediatric Research |
|
| Existence of an identified contact person for external enquiries | Yes | Enquiries are collected through a contact form on the Network's website and forwarded to Partners according to the subject of the request. |
| Existence of an internal steering committee | Yes | TEDDY Board of Directors |
| Existence of an external advisory steering committee directing the reporting party | Yes | TEDDY Strategic Planning Board |
| Existence of a website | Yes | www.teddynetwork.net |
| Existence of newsletter | Yes | Electronic newsletter |
| Existence of internal databases for disease, condition treatment and/or outcome | No | |
| Provisions to ascertain data protection and data security | Yes | Databases are managed according to current rules on data protection and data security. SOPs are developed to guarantee data protection and data security. e-CRF (electronic Case Report Form), in order to comply with the GCP (Good Clinical Practice) and regulations on the protection of people's safety and well-being are developed. |
| Procedures to access the database by third parties | Yes | Databases are not accessible by third parties outside the Data Controller disposition. Access to personal data is not allowed. For each project requiring data sharing for analysis and study conduct, TEDDY proposes a ‘Data Sharing Agreement’ (DSA) to be signed by all the participants. DSA should include at least details on: - Type of data to be transferred and future use - Data controller responsibilities (data protection and security) - Centre responsibilities (data integrity and anonymisation/no-reidentification allowed). |
| Access to external databases/registries | No | |
| Standardised process to access an external database | No |