Overview
The PRES SLE Working Party is an international, multi-disciplinary, multi-professional group of clinicians, academics, scientists and trainees from across Europe and beyond. They gather each year at PRES to share their expertise, activities and proposals for collaborative clinical studies in childhood-onset systemic lupus erythematosus (cSLE) and paediatric anti-phospholipid syndrome (APS), and work throughout the year to take them forward.
Aims
- To share expertise, activities and proposals for collaborative clinical studies in cSLE and paediatric APS
- To support the development of specific studies and/or initiatives agreed by the group as important for improving the care and understanding of cSLE and paediatric APS
- To update and share progress with colleagues on local, national and/or international initiatives and projects related to cSLE and paediatric APS
- To foster educational initiatives supported by PRES in relation to cSLE and paediatric APS
Composition
Over 80 people from across the globe participate in the group’s mailing list. All receive minutes and slides of the talks. Attendance at the face to face meeting ranges between 25-35 people per year, depending on other clashes with other Working Parties (2016). The group works closely with many of the other PRES Working Parties.
Number of members: approximately 80-100
Members of the core team:
- Chair: Eve Smith (elected in September 2023)
- Secretary: Selcan Demir (elected in September 2023)
- Lead of science & research pillar: Coziana Ciurtin, Emiliano Marasco, Katerina Bouchalova
- Lead of training & education pillar: Angela Migowa, Edoardo Marrani
- Lead of clinical care pillar: Elena Moratis,Sezgin Sahin
- Patient/parent representative: Delila Tremarias, Sammy Ainsworth
- AHP representative: Yvonna Glakin, Lea Hofel
- EMERGE representative: Nergis Akay
- Charge for cooperation with CARRA: Eve Smith
Activities
A wide range of activities are supported, and all members are warmly invited to bring proposals to the annual meetings. Current activities are summarized in the Annual Report. Key on going initiatives include:
- SHARE: Lupus and APS Recommendations
- A series of internationally agreed, evidence-based recommendations regarding the diagnosis and management of cSLE and paediatric APS, including lupus nephritis and neuropsychiatric lupus, that are currently being published.
- Developing a minimal clinical cSLE dataset.
- Use of corticosteroids in cSLE.
- Support for the paediatric-related work arising from the international APS Conference
2017 Report
Download the SLE working party report
Contacts
- Chair: Sylvia Kamphuis (s.kamphuis@erasmusmc.nl)
- Secretary: Sezgin Sahin (sezgin@istanbul.edu.tr)
