2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
Medicines for Children Research Network (MCRN) -Hungary |
|
| Existence of an identified contact person for external enquiries | Yes | General enquiries: info@mcrn.hu Coordinator: Eva Villanyi, MD |
| Existence of an internal steering committee | Yes | 6 members internal steering committee |
| Existence of an external advisory steering committee directing the reporting party | No | |
| Existence of a website | Yes | |
| Existence of newsletter | Yes | |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | 1. MCRN database of experienced paediatric research centres in Hungary, including contact details, dedicated staff, conditions covered, facilities and capacity. 2. Direct access to major disease registries: Hungarian Paediatric Oncology Registry and Hungarian Neonatal Registry |
| Provisions to ascertain data protection and data security | Yes | Complience with Hungarian National Data Protection Law (2011/CXll) |
| Procedures to access the database by third parties | Yes | MCRN Hungary SOP is under development. Third party will receive anonymised and cumulative data. |
| Access to external databases/registries | Yes | Access to Hungarian National Competent Regulatory Agency (Orszagos Gyogyszereszeti es Elelmezes-egeszsegugyi Intezet; OGYEI) data on request. |
| Standardised process to access an external database | Yes | Procedures of Health Authorities are followed. Direct access to major disease registries: Hungarian Paediatric Oncology Registry and Hungarian Neonatal Registry |