The overall concept of the HarmonicSS project is 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.
HarmonicSS has 9 objectives:
- To establish a unified and semantically enriched knowledge sustainable network of the major clinical and research groups working on pSS and a steering committee for coordination.
- To analyze the ethical, legal, privacy and IPR issues for integrating cohorts from different countries .
- To achieve individual cohorts data quality and completeness through clinical preparatory actions.
- To harmonize the individual cohorts and create the integrative cohort on pSS.
- To deliver the core ICT services infrastructure for clinicians, researchers and health policy makers.
- To address the research and clinical unmet needs in pSS.
- To develop the HarmonicSS tools for patient selection in clinical trials, segmentation of salivary gland ultrasonography and training of general practitioners.
- To deliver evidence and actionable insights for health policies in pSS and pilot application.
- To achieve sustainability, expandability and exploitation of the platform.