1. EULAR Study Group on Systemic Lupus Erythematosus (SLE) Dimitrios T
EULAR Study Group on Systemic Lupus Erythematosus (SLE) Dimitrios T. Boumpas (leader), George Bertsias (facilitator), on behalf of the Study Group members
The EULAR study Group on SLE was established in 2011 and serves the following objectives:
Network clinicians and researchers interested in SLE and increase the pool of younger people interested in the disease
Inform and coordinate educational activities for fellows, nurses and patients
Develop and disseminate management recommendations for lupus by encouraging the participation of new people both willing and able to support such activities
Update on research initiatives at the translational and clinical level
Discuss topics that we wish to propose for the annual EULAR meeting scientific meeting
Summary of the work and achievements of the study group
The Study Group has regular (annual) meetings which take place during the EULAR meeting
To date, more than 100 individuals (including trainees, rheumatologists, clinical immunologists) have joined the study group and have actively participated in the meetings
The work of the study group includes:
Reports by the members of the lupus meetings and congresses they have organized (e.g. European Lupus Meetings)
Educational issues such as: Lupus training sites in Europe, undergraduate student curricula, slides collection on SLE
A number of basic/translational and clinical research initiatives have been presented and discussed such as: development of a European SLE registry, Biologics SLE registry, SLE bio-banking, CNS lupus project, investigator-initiated controlled studies in lupus nephritis, MSC study in refractory SLE, patient-reported outcomes, Horizon 2020 projects etc.
Patients’ perspective and initiatives (e.g. the role of lupus groups in enhancing the clinical setting and supporting the scientific advancements in the disease
Proposals for EULAR-endorsed recommendations on lupus aspects have been presented (e.g. Laboratory diagnostic tests for the management of SLE, Diagnosis and Management of Cutaneous Lupus, Pregnancy/Contraception/Fertilization in women with SLE, new SLE classification criteria)
Ongoing and pending proposals for research grants (Horizon, FOREUM etc.) have also been presented, followed by discussions among members for possible collaborations
Topics for the EULAR Annual Scientific Meeting
Administrative issues
Conclusion
There is need to have a EULAR Task Force to increase awareness for lupus.
Strong support for international participation and inclusiveness.