Patient Involvement

Home Patient Involvement

Patient involvement in the NECESSITY Project

The involvement of patients and the consideration of their views and needs are at the core of the NECESSITY project. We believe that increased patient engagement in research and drug development enables a more patient-centric research or therapy strategy. It also aims to de-risk research and to accelerate the translation of research into actual therapies. Such an approach is particularly important for successful clinical trials in diseases such as primary Sjögren’s syndrome , which is a mis/underdiagnosed disorder. In addition, patients’ opinions are crucial in the development of new biomarkers and clinical endpoints to capture relevant and currently underestimated or ignored disease aspects.

The French Association of Sjögren’s Syndrome (Association Française du Gougerot Sjögren – AFGS) on behalf of the International Sjögren’s network (ISN) is a Partner of the NECESSITY Project.

AFGS will have a strategic role in the NECESSITY Project. Specifically, they will provide patient’s views with respect to the development of new clinical biomarkers and endpoints, raise awareness in the society and political fora about the project topics, increase awareness about development of new strategies for management of randomized clinical trials, raise attention about how to improve access to most appropriate care, and reduce social burden.

The NECESSITY website includes a “Patient corner” page. This is a space dedicated to patients and created by patients. It will include testimonies of patients, information about the clinical trial, events etc.

Abbreviations: AFGS = Association Française du Gougerot Sjögren (French Association of Sjögren’s Syndrome); ISN = International Sjögren’s network.