1. Francesca Barone on behalf of Essential study group.
Sjogren’s syndrome Study Group EULAR Sjogren’s Syndrome Experimental and Translational investigative Alliance
Francesca Barone on behalf of Essential study group.
ESSential is a platform aimed at creating a network of basic researchers and clinicians interested in Sjögren’s Syndrome and promote research initiatives, facilitating international collaboration and interaction.
ESSential has provided a platform to integrate, upscale and validate studies performed in single cohorts in Europe.
Essential members have met biannually with a good attendance by the Sjogren’s community. These meetings have been successful in integrating and facilitating interaction between the different groups. This platform has facilitate the communication and integration of international projects.
Translational :
Members of eSSential have been involved in the preparation of a bid for the IMI on Sjogren’s Syndrome - Development of sensitive and validated clinical endpoints in primary Sjögren’s Syndrome (pSS).
One of the key deliverables of the IMI is the generation of a stratification tool for patients with pSS ,with the research of biomarkers in the blood and in the tissue able to stratify patients based on prognosis, organ involvement and potential response to treatment.
Several members of Essential are involved in Harmonics, a large European grant awarded to Salvatore De Vita and Athanasios G Tzioufas to harmonize the European cohorts and standardize data and sample collection in Europe.
Essential is leading an international activity in collaboration with members of the ACR to re-define pSS histological criteria. A workshop is planned for the ACR meeting 2018.
Ultrasound sub study group
Lead by Valerie Devauchelle Pensec:
This subgroup, already recognised as Ultrasound study group ( established in 2012), is driving the initiative to integrate the use of ultrasography in the diagnostic criteria for Sjogren’s syndrome. This group has been associated to Essential in In order to establish the use of US as diagnostic tool, the group is undergoing a large multi-centric consensus study , following OMERACT guidelines. Several abstracts on this work have been submitted to EULAR 2017.
UTOPIA PROJECT: Integration of Salivary-Gland Ultrasonography in Classification Criteria for Primary Sjögren’s Syndrome:
an International Vignette-Based Study.
24 international experts in pSS .
Internet-secure relational database, 512 realistic vignettes, abstracted from 150 patients with suspected pSS included the DiapSS cohort and the
Italian cohort.
Each vignette contained sections on ‘history’, clinical symptoms, results of the SGUS evaluation, results of the major tests to diagnose pSS
Each expert scored the diagnosis of pSS as absent, unlikely, likely or present for 64 vignettes. Each vignette was evaluated by 3 experts, and diagnosis of pSS was obtained when at least 2 of 3 considered it.
Clinical substudy group:
Lead by Raphaele Seror and Prof. Xavier Mariette is leading the IMI bid with the aim refine the clinical endpoint to be used in clinical trials, analysing the performance of the ESSDAI domains in closed clinical trials and define a composite endpoint for future trials.
The second project is aimed to produce a predictive score for lymphoma development SCOLISS
. The merging of large number of European cohorts , obtained within Harmonics will provide the platform to develop this score.