2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
Multinational Interdisciplinary Working Group for Juvenile Idiopathic Arthritis associated uveitis |
|
| Existence of an identified contact person for external enquiries | Yes | Dipl. biol. Nicola Helmus, Coordinating Studynurse Schönklinikum Eilbek Dehnhaide 120, Haus 8 22081 Hamburg, Germany Tel: +49 40 2092-3697 Fax: +49 40 2092-3693 Email:MIWGUC@kinderrheumatologie.de |
| Existence of an internal steering committee | Yes | Pediatric Rheumatologists: Ivan Foeldvari Gabriele Simonini Jordi Anton Opthalmologists: Arnd Heiligenhaus Clive Edelsten Joke H. de Boer |
| Existence of an external advisory steering committee directing the reporting party | No | |
| Existence of a website | Yes | |
| Existence of newsletter | Yes | every 6 months |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | Customized pseudoanonomized Data base, at the Deutsche Rheumaforschungszentrum |
| Provisions to ascertain data protection and data security | Yes | Case sensitive password pseudoanonimized data collection |
| Procedures to access the database by third parties | Yes | IRB, and steering committee valutation |
| Access to external databases/registries | Yes | We have an agreement with a Spanish and Italian data base, already availble |
| Standardised process to access an external database | Yes | Official request linked to a specific project according to regulatory issues and always related to the ongoing research project |