Silvia Aguilera @silvia-aps.bsky.social · 20/11/2025🇪🇺Today, as part of the @eular.org #PARE conference, we are visiting the European Parliament! 💪🏼 Proud to be representing ERN ReCONNET and @afosfolipido.bsky.social 010
Silvia Aguilera @silvia-aps.bsky.social · 13/11/2025In Ljubljana attending the ERN ReCONNET #Transition training workshop! Looking forward to 2 days of exchanges and brainstorming together. Thank you to Drs. Tadej Avcin and Mojca Zajc for the invitation 😊 000
Silvia Aguilera @silvia-aps.bsky.social · 12/07/2025In Munich 🇩🇪 today with the @eular.org #PARE committee, working already on topics like the November Conference or 2026 EULAR Congress! 011
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: Takeaway messages: 👉🏼 Ask and listen! 👉🏼 Start the conversation! 031
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: EULAR PARE Posters: ☝🏼47 Posters 📊3% of Posters 🎤3 Poster Tours 131
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: #EMEUNET Meets PARE "Speed-dating" Event 👉🏼 From patient's perspective, identify key research priorities and future directions. 110
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: Meet the Experts: 👉🏼“Collaborative Research: Insights From Researchers on Patient Partnerships” by Martin J. Stevens #notokenism 👉🏼“Together on the Journey: Child and Family Involvement in Rheumatology Transition” by Klaire Connor 121
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: Al in medicine: Your future doctor and researcher, chaired by Michael Poelzl and Corinna Elling-Audersch 121
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: The Sleep Struggle: Navigating Fatigue in RMDs, chaired by @drminidey.bsky.social and Marcos Séneca 120
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: PARE Abstract Session: From Abstract to Concrete: PARE Perspectives, Preferences, and Expectations in RMDs. Chaired by Caroline Kirsten and Kyriaki Spanidou. The #EdgarStene prize “Tangible Memory” by Yvonne Balvers was presented: www.eular.org/pare-stene-p... 110
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: Let's talk about relationships - conception to birth, chaired by Jeanette Andersen and Peter Boyd 121
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: Breaking the silence on mental health and inflammation, chaired by Peter Böhm and Jeanette Andersen 110
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025#EULAR2025 #PARE #Highlights: Fishbowl session - From exclusion to empowerment: Engaging marginalised groups, chaired beautifully by @simonrstones.bsky.social 111
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025Michael #Highlights #LupusGPT developed by @lupuseurope.bsky.social, a new AI tool aimed for patients, who just won the PFMD “Made with Patients” award. Congratulations! 🥳 Find it here: lupusgpt.org 152
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025First session in #Highlights : Transforming Healthcare: Navigating New Technologies, chaired by Diederik De Cock and Kyriaki Spanidou #EULAR2025 #PARE 110
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025Michael starts by summarising the contribution of the #PARE community to #EULAR2025 110
Silvia Aguilera @silvia-aps.bsky.social · 14/06/2025Very happy to see again #PARE highlights in the closing session of #EULAR2025. Michael Poelzl presented the #Highlights of the Patient and joint sessions presented by Peter Boyd, a 🧵 173
Reposted by Silvia AguileraDr Simon Stones @simonrstones.bsky.social · 13/06/2025Wonderful to hear from our @eular.org 2025 Edgar Stene Prize winner, Yvonne Balvers, who focused on the challenges of everyday activities that able bodied individuals may dismiss, and the persistence of trauma from childhood-onset RMDs into adulthood #eular2025 062
Reposted by Silvia AguileraDr Simon Stones @simonrstones.bsky.social · 13/06/2025Fantastic to see Sladjana, a STRATA-FIT patient research partner, presenting about the project and the evaluation of PRP involvement - partnership, communication, and support are critical #eular2025 052
Reposted by Silvia AguileraMrinalini Dey @drminidey.bsky.social · 13/06/2025Day 3 of #EULAR2025! 😴 We’ll discuss all things related to sleep & fatigue in this fascinating #PARE session 📍 C3 🕰️ 15:45-17:00 🗓️ Today! 👋🏼 See you there! 062
Reposted by Silvia AguileraDr Simon Stones @simonrstones.bsky.social · 13/06/2025The disconnect between patient and HCP priorities in Sjogren’s Disease endpoint priorities, specifically for pain, fatigue, and QoL is evident #eular2025 052
Reposted by Silvia AguileraDr Simon Stones @simonrstones.bsky.social · 13/06/2025Co-creation in practice: creating new clinical endpoints for primary Sjogren’s Disease between patient organisations, healthcare professionals, and industry professionals #eular2025 041
Reposted by Silvia AguileraDr Simon Stones @simonrstones.bsky.social · 13/06/2025Support requests for patient organisations regarding roll-out of electronic health records… again highlights the need for integrated collaborative approaches between healthcare providers/payers and patient organisations #eular2025 052
Silvia Aguilera @silvia-aps.bsky.social · 13/06/2025At the #EULAR2025 #PARE Poster tour, full room! 131
Reposted by Silvia AguileraDr Simon Stones @simonrstones.bsky.social · 11/06/2025Daniel Aletaha, President of EULAR, always knows how to make an entrance! #EULAR2025 is officially underway! 👏 @eular.org 021
Reposted by Silvia AguileraRhePro @rheproat.bsky.social · 09/05/2025IMPACT Trial Certolizumab in high-risk pregnancies (APS + LAC): • Complications: ↓ from 80% to 20% • Gestational age: ↑ from 24 to 36.5 weeks • Live births: ↑ from 38% to 93% Huge congratulations to Jane Salmon & team – truly transformative results! 046
Silvia Aguilera @silvia-aps.bsky.social · 10/05/2025🤔Missed any #RheumaPreg25 sessions? No worries! Join the highlights webinar on May 26. Contact @karenschreiber.bsky.social or @lauraandreoli.bsky.social to join the #ReHFaP mailing list 📩 084
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025Karen finishes with a call for action: We need more interventional studies in #oAPS! #RheumaPreg25 #APS 010
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 #HYPATIA Trial Update: #APS Pregnancy Research - Randomized controlled trial - Hydroxychloroquine focus - 328 women to be enrolled - Multi-country collaboration - Targeting women before pregnancy To find out more: bepartofresearch.nihr.ac.uk/trial-detail... #RheumaPreg25bepartofresearch.nihr.ac.ukBe Part of Research - Trial Details - HYPATIA: A prospective randomised controlled trial of hydroxychloroquine to improve pregnancy outcome in women with antiphospholipid antibodies${dotPageContent.seodescription} 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 Clinical Trial Design Revolution - Innovative approaches: - Multicountry collaborations - Flexible research methodologies - Patient-centric protocols - Overcoming bureaucratic hurdles #RheumaPreg25 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025@karenschreiber.bsky.social mentioned our article "Challenges of designing and conducting cohort studies and clinical trials in populations of pregnant people" from The Lancet Rheumatology @thelancet.bsky.social, Volume 6, Issue 8, e560 - e572. You can find it here: www.thelancet.com/journals/lan... 131
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 #APS Research Ecosystem - Key insights: - Rare disease complexity - Need for standardized criteria - International collaboration - Patient network development Future: Precision medicine approach 🧬 #RheumaPreg25 110
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 #APS Pregnancy Intervention Strategies Current approaches 💊: - Aspirin + Heparin - Pravastatin trials - Hydroxychloroquine studies - Biological agent investigations Promising but incomplete evidence! 🤰 #RheumaPreg25 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 International #APS Research Landscape - challenges: - Limited ongoing clinical trials - Complex patient populations - Diverse antibody profiles - Innovative trial designs required Urgent: Expand research networks! 🚨 #RheumaPreg25 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 #APS Clinical Trials Update: Only Handful of Studies Found! Discoveries so far: - New classification criteria - 70-80% pregnancy success with current treatment - Exploring alternative therapies - Multicenter international trials needed Need MORE research! 🚨 #RheumaPreg25 110
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025@karenschreiber.bsky.social has presented "Quo vadis" obstetric #APS 👇 #RheumaPreg25 162
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 APS Clinical Trials Update: Only Handful of Studies Found! Discoveries so far: - New classification criteria - 70-80% pregnancy success with current treatment - Exploring alternative therapies - Multicenter international trials needed Need MORE research! 🚨 000
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🔬 #APS diagnosis and treatment approach - Classification criteria alone should not change diagnosis or treatment - Phenotype-based approach recommended - Maintaining consistency in care is essential for patient outcomes #oAPS #RheumaPreg25 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🏥 #APS classification for clinical trials - Updated criteria are useful for clinical trials but not for treatment decisions - Classification should not change patient diagnosis or care - Focus on phenotype-based treatment instead #oAPS #RheumaPreg25 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🧬 Emerging #APS risk factors - Anti-domain 1 and anti-PS/PT antibodies linked to pregnancy complications - New antibody profiles challenge traditional risk factors - Shaping future APS diagnostic criteria #oAPS #RheumaPreg25 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🤔 #APS patients not fitting new criteria: - 44% of patients with early miscarriage and IgM antibodies not included - Severe patients might not fit new classification despite serious medical history - Need for more inclusive classification systems #RheumaPreg25 #oAPS 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025👩🔬 #APS pregnancy outcomes: - 32% of new pregnancies had complications despite treatment - Miscarriage and other issues persisted despite conventional care - Important to understand variations in patient response #RheumaPreg25 #oAPS 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🧑🔬 #APS classification criteria update: - Concordance between historical APS diagnoses and new criteria ranges from 21% to 50% - Many patients with severe osteopathic history excluded - Need for careful reevaluation of patients outside the new criteria #RheumaPreg25 #oAPS 100
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025Prof. Angela Tincani (Brescia, Italy) talks about "Implications of New Classification Criteria of APS" #RheumaPreg25 120
Silvia Aguilera @silvia-aps.bsky.social · 09/05/20252️⃣ Second session "Beyond the clot: challenges in obstetric antiphospholipid syndrome", chaired by Nathalie Costedoat-Chalumeau and Karoline Mayer-Pickel! #RheumaPreg25 #APS #APSmatters #oAPS 020
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025🚀 Urgent Need: - Faster evidence generation - More transparent risk-benefit analysis - Personalized medical decision-making #RheumaPreg25 000
Silvia Aguilera @silvia-aps.bsky.social · 09/05/2025💪 Key Goals: - Shift from "vulnerable" to "complex" population - Protect women THROUGH research, not FROM research - Generate earlier evidence in drug development #RheumaPreg25 100
