HarmonicSS is a research project entitled - HARMONIzation and integrative analysis of regional, national and international Cohorts on primary Sjögren’s Syndrome (pSS) towards improved stratification, treatment and health policy making disease. HARMONICSS project officially started on 1st of January 2017. The kick off meeting took place in University of Athens premises in Athens on the 12th and 13th of January, 2017.
HarmonicSS vision is to create an International Network and Alliance of partners and cohorts, entrusted with the mission of addressing the unmet needs in primary Sjogren Syndrome; working together to create and maintain a platform with open standards and tools, designed to enable secure storage, governance, analytics, access control and controlled sharing of information at multiple levels along with methods to make results of analyses and outcomes comparable across centers and sustainable through Rheumatology scientific associations.
This project has received funding from the European Union’s Horizon 2020 Horizon 2020 research and innovation programme under grant agreement No 739144 and from the Swiss State Secretariat for Education, Research and Innovation SERI under grant agreement 16.0210.
Primary SS is a disease where effective treatments are still lacking and where many novel and expensive targeted therapies are under investigation. Despite the high activity in the field, there is a high risk of suboptimal results, largely because there are no common shared criteria to distinguish and select the patients (e.g. per type of autoantibody positivity or duration of the disease). The European League Against Rheumatology (EULAR) and the American College of Rheumatology worked towards improving this and developed novel classification criteria for pSS (2013) and EULAR initiated the development of the Sjögren's syndrome disease activity index – ESSDAI (2015).
Another reason for suboptimal results is that patient databases are governed by a highly heterogeneous variety of medical and legal rules across Europe and are still collected in heterogeneous databases across the different EU countries, making comparisons difficult. This project aims to improve the databases and international collaboration between researchers and other interested stakeholders and is a crucial step for the study and diagnosis of pSS.