The NECESSITY project aims to improve the quality of life of patients suffering from primary Sjögren’s syndrome by increasing the success rate of clinical trials. The needs of the patients are at the core of the project and its activities and outputs are driven by their voices.
AFGS (Association Française du Gougerot-Sjögren), a patient association partner of the NECESSITY project, is coordinating the interaction with patients. AFGS has formed a Patient Advisory Group (PAG) composed of 8 members from patient organizations from Europe and the US.
The PAG is supporting work packages 5, 6, 7, 8, 9 and 10. Specifically, the patients are involved in the development of new outcome measures and tools for use in future clinical trials in primary Sjögren’s syndrome and in the elaboration of the NECESSITY clinical trial protocol which aims at validating these new measures and tools. Another important contribution of the PAG is to communicate on the project’s goals, activities and results with the patients, their families and the general public. To meet that objective, the PAG has developed this webpage to share their experiences with the disease and their contribution to the NECESSITY project.