HARMONIzation and integrative analysis of regional, national and international Cohorts on primary Sjögren’s Syndrome (pSS) towards improved stratification, treatment and health policy making
Funding body: RIA, Horizon 2020, European Commission
Dates: 2017-2020
Coordinator: National and Kapodistrian University of Athens (GR)
Consortium: 35 partners, 13 countries
Overall budget: € 9 million
LBAI specific budget: € 340,000
Porject website
The challenge:
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.
The objectives:
This project aimed to improve the databases and international collaboration between researchers and other interested stakeholders.
The overall concept of the HarmonicSS project was to bring together the largest well characterized regional, national and international longitudinal cohorts of patients with Primary Sjögren’s Syndrome (pSS) including those participating in clinical trials, and by taking into consideration the ethical, legal, privacy and IPR issues for sharing data from different countries, to semantically interlink and harmonize them into an integrative pSS cohort structure on the cloud. Upon this harmonized cohort, open services for big data mining, governance and visual analytics have been integrated, to address the identified clinical and health policy pSS unmet needs. Moreover, tools for specific diagnostic procedures (e.g. ultrasonography image segmentation), patient selection for clinical trials and training have also been provided.
LBAI involvement:
UMR 1227 was involved in the validation of existing clinical and biological markers and the implementation of patient stratification markers by setting up composite scores. We are also in charge of producing common SOPs for the conservation of blood, tissues, saliva, serum, cells, DNA, RNA and biopsy samples in each of the clinical partners' biobanks.
J.O. Pers was a member of the HarmonicSS Steering Committee.
HarmonicSS Platform - Technical Presentation
This project has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under Grant Agreement No. 731944 and from the Swiss State Secretariat for Education, Research and Innovation SERI under Grant Agreement 16.0210.
