2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
I-BFM-SG - International BFM Study Group |
|
| Existence of an identified contact person for external enquiries | Yes | Prof. Andrea Biondi as chairman of the I-BFM-SG as of April 2016 |
| Existence of an internal steering committee | Yes | Each clinical study as an internal steering committee. |
| Existence of an external advisory steering committee directing the reporting party | Yes | An international Data Monitoring Safety Committee (DMSC) is a requirement of all I-BFM-SG clinical studies. |
| Existence of a website | Yes | http://www.bfm-international.org/ |
| Existence of newsletter | No | |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | |
| Provisions to ascertain data protection and data security | Yes | Patients' data protection are assured by each National Study Group. |
| Procedures to access the database by third parties | Yes | Bylaws for DMSC are in place. |
| Access to external databases/registries | No | |
| Standardised process to access an external database | No |