The involvement of patients and the consideration of their views and needs are at the basis 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 end-points to capture relevant and currently underestimated or ignored disease aspects.