There is still so much to learn about lupus in Europe. One of the ways this is happening is through surveys. Some are organised by LUPUS EUROPE, others by the European reference Networks or our partners, others by academics or other member groups… To help you contribute, we have assembled here some of the surveys currently available. Don’t hesitate to click on the respective links to provide your input to all!
New content online! Paediatric glucocorticoid toxicity index: new possibilities in assessment http://dlvr.it/SYpFhv
✅ Interesting summary of our recent paper on #Lupus #Fatigue by the @RheumatologyNet ⬇️
https://doi.org/10.1136/rmdopen-2022-002395 https://twitter.com/RheumatologyNet/status/1572647013061398528
#Fatigue, a highly multifactorial manifestation of #lupus, can be related to disease activity or independent of the disease itself. Investigators determined whether fatigue could be a significant confounder of Physician Global Assessment ratings.
http://ow.ly/qSJR50KPszL
Patients from the Systemic Lupus International Collaborating Clinics cohort were serially assessed with different measures of remission in this cohort study. Showed that remission and low disease activity are associated with less damage accrual over time. https://bit.ly/3TSmxz3
3. A field day
ERN ReCONNET Systemic #Lupus Erythematosus Group Kick-off meeting with the Disease Coordinator @MaartenLimper and ePAGs Jeanette Andersen & Alain Cornet.
Seventh of ten #KoM, wheigh anchor!
https://reconnet.ern-net.eu/disease-sle/ #SLE
#ERNReCONNET. More than a Network.
T2T is a well know approach used by physicians worldwide that consists of:
1️⃣ Establishment of the target to achieve, usually LLDAS & remission
2️⃣ Take the necessary steps to achieve it.
3️⃣ Asses and monitor the achievement.
4️⃣ Change/adjust treatment if not achieved.
#lupus2022
Patients can forget asking certain questions,especially the day they are diagnosed,due to the shock of knowing they have lupus. What is the question you should have asked that you didn't?
Physicians:what is the most important question we should ask when being diagnosed? #Lupus100
Thanks @LupusEurope for the divulgation!! @RELES_SER >4000 SLE patients, the largest SLE National Registry in the world @SEReumatologia. ~1500 prospectively followed, FU 7 years. This study by @claramoriano in #lupus2022. ~20 RELESSER papers in #Pubmed. See you in Stockholm!! https://twitter.com/LupusEurope/status/1572979687420313601
The RELESSER study, carried out by @PegoReigosa et al. from @SEReumatologia, will also be presented at #lupus2022. You can read more about the Spanish Registry of Systemic #Lupus Erythematosus of the Spanish Society of Rheumatology here https://ard.bmj.com/content/79/Suppl_1/1053.2
Mortality in #lupus varies largely across different countries, most probably due to social, healthcare & ethnic differences. Knowing the predictive factors of poor outcomes in SLE can make possible to develop early interventions to help improve the prognosis in these patients
https://rmdopen.bmj.com/lookup/doi/10.1136/rmdopen-2022-002395
📢Register now!!
1st EULAR Online Course for Patient Research Partners. PLZ🙏RT👍!
People with #RMDs! we want you in our research as partners!
For more information about the course, organisation and registration: https://esor.eular.org/login/index.php
PARE-PRP-2225 @eular_org
The next intake of the @eupatients #PatientExpert Training is now open for registrations until the 1st of November! If you are interested in medicines R&D and patient engagement, become an EUPATI fellow now by enrolling this course here: https://buff.ly/3xFRYmt
Last week we heard the exciting news that CAR T-cell therapy had shown very promising results in the treatment of SLE.
With the help of @chriswincup, we have developed an article so that you can learn more about this treatment and the trial.
https://www.lupusuk.org.uk/car-t-cell-therapy/
IFN-pathway activation is the single strongest transcriptomic risk marker of progression from the ANA positive At Risk state, as shown in this study by @AntonyPsarras, @edvital et al. that will be presented at #lupus2022
OP0234 RNA-Seq IN PERIPHERAL BLOOD IMMUNE CELLS IDENTIFIES MODULAR NETWORKS PREDICTIVE AND PROTECTIVE FOR PROGRESSION FROM ANA POSITIVITY TO CLASSIFIABLE SYSTEMIC AUTOIMMUNE DISEASE.
Background Anti-nuclear antibody (ANA) positivity represents a complex ‘At-Risk’ state for development of connec...
buff.ly
Don't miss the chance to send your #abstract to the First International #Congress on rare and low-prevalence connective tissue and musculoskeletal diseases (Brussels, 20-22 april 2023)
http://ern-reconnetcongress.com/abstract
➡️ deadline 15/11/2022 🔚
This one ⬇️ is really helpful to understand #Fatigue in #LUPUS #SLE (from our review: https://doi.org/10.3390/jcm10173996)
✅ Latest (openaccess 🔓) from my group with @MertzP 🧑🎓 showing how #FATIGUE is common in systemic #Lupus and how it interacts with the assessment of DISEASE #ACTIVITY 💥 Understanding this is key 🔑 to standardize disease activity instruments in #SLE 👍
Fatigue is independently associated with disease activity assessed using the Physician Global Assessment but not the SLEDAI in patients with systemic lupus erythematosus
Objectives To analyse whether reported fatigue, one of the most challenging manifestations of systemic lupus erythematos...
doi.org
In the 13 European Lupus Meeting we will be able to listen to Prs. @IoannisParodis, Ruiz-Irastorza from @equipo_eas, @Lupusreference, @EricFMorand, @Lupusdoc and many more excelent lupologists. We will also learn about the latest lupus research. Make sure you follow #lupus2022!
A study related to gut microbiota by Galicia-Rosas et al. from @genyo_pts will be presented in #lupus2022. The study indicates a link between Bank1 & microbiome composition in the gut & a possible role of microbiota in regulatory B cell induction in #lupus
Bank1 Signaling Shapes the Gut Microbiota Composition by Controlling the Gut Mucosal B-cell Response in Lupus - ACR Meeting Abstracts
Background/Purpose: Mucosa-associated commensal bacteria have been shown to be involved in the pathogenesis of systemic ...
buff.ly
The #lupus2022 @SLEuroSociety meeting is an important event for both physicians, investigators, nurses, patients and all those interested in #lupus. You will see the reason soon: we will be showing you some of the studies that will be presented!
Great to be at the @RoySocMed today for a Festschrift for Professor David Isenberg - Past, present and future of autoimmune rheumatology!
An exciting day of talks about all things #lupus #myositis #APS
Low levels of ECR1 in early or mid-pregnancy are predictive of an adverse pregnancy outcomes in systemic lupus erythematosus. Therefore, screening for ECR1 and EC4d early in pregnancy may identify patients with increased risk of serious pregnancy complications.
Despite the limitations that the authours acknowledge in this study, the findings will make possible to identify high risk patients and consider a closer management and reinforce the recommended preventive measures.
lupus.bmj.com
Background Complement activation has been associated with adverse pregnancy outcomes (APO) in SLE. Pregnant women with SLE were studied to evaluate whether complement dysregulation within the first tw...
Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.
What is the question you should have asked and you didn't?
What is the question you think physicians should answer without being asked?
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament
Recording your appointment helps
Medication side effects short and long twem
More good news for the #lupus commnunity!!
Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.
ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
Date is set! And #Lupus100 is fast approaching.
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www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
