6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
PRINTO - Pediatric Rheumatology International Trials Organisation |
|
| Involvement of patients, parents or their organisations in the protocol design | No | |
| Involvement of patients, parents or their organisations in creating the protocol info package | No | |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | Patient's and parent's organisations have been identified through a specific project funded by the European Union that allowed the creationg of a website for families available on more than 50 languages (www.pediatric-rheumatology.printo.it). The website provides information on pediatric rheumatics diseases, the list of pediatric rheumatology centres and the list of family help association. The website has been enriched and updated thanks to a project called SHARE, “Single Hub and Access point for paediatric Rheumatology in Europe”, a European project whose main objective is to improve the quality of care of patients suffering from Paediatric Rheumatic Diseases. In addition, organisations are invited to attend the annual PRINTO workshop held each year at the PRES scientific meeting |