The Lupie Fam’s Post

EATRIS turns 10! This week we are attending the 10-year anniversary of EATRIS, in The Hague. What are the challenges and opportunities for translational medicine in Europe? How can we foster #PatientEngagement? The anniversary event will tackle these questions, trying to shed light on the added value that patient engagement can bring to translational research. Stay tuned and follow us on social media for updates! #EATRIS10 #EATRISPlus

Catch Richie Pfeiffer presenting at the #Lupus Clinical Investigators Network (LuCIN) meeting in San Diego, where he will be looking at the role decentralized clinical trials play to increase #diversity and representation in lupus research. Learn more about our work this #LupusAwarenessMonth. » https://bit.ly/3y1OX2W #decentralizedclinicaltrials #clinicalresearch #lupusresearch

🌟 Today, Anton Ussi, CEO of EATRIS and Steering Group member of Together for Rare Diseases, is sharing how our partnership is making a difference! 🌟 🔬 Anton Ussi showcases the pivotal role of EATRIS (European Infrastructure for Translational Medicine) in bridging the gap between scientific breakthroughs and tangible medical advancements. The pan-European research infrastructure serves as a catalyst for transforming discoveries into impactful treatments. 🤝 Together, we are determined to unlock new avenues for partnerships. Let's join forces to make a difference in rare disease treatment and patient care! Watch the video below to find out more on the transformative potential of our collaboration 👇 #EATRIS #Together4RareDiseases #RareDisease #TranslationalMedicine

For more information on this Oral Abstract where GOG-3059 will be presented during the 2024 ASCO Annual Meeting, go to https://ow.ly/4QV050S0FhW or click in bio. #clinicaltrials #GOGF #GOGPartners #GynecologicOncology #ASCO24

The star of the show isT.J. Sharpe and the reality of why we are still having this exhaustive conversation... is because of courageous humans like you and bewildered humans like me! Thank you so very much for changing my focus when I heard you speak for the first time almost 9 years ago. There is simply no more appropriate perspective than the lived human clinical trial participant and healthcare human experience in demonstrating the WHY NOT!! Informed decision making requires a commitment to ensuring the timely sharing of linked health data generated by patients/study participants wherever they are on their care journey and helps all stakeholders understand the patient experience, the evolution of patient safety, product effectiveness over time and valuable evidence generation. Solutions to ensure a risk-based, meaningful, pro-active, ethical approaches/options for the return of individual participant data and lay summaries demonstrates reciprocity, respect and partnership, requires global harmonization and flexibility and has the ability to transform the cultural thinking about what is possible when we critically think and re-think about our shared mutual objectives, reducing burden on health systems and patients to accelerate medicines development. Essential to ensuring the sustainability of R&D and improving global health equity. Providing pragmatic personalized options which matter most to patients and their care providers and securing mechanisms that will facilitate the convergence of clinical care and clinical research is no longer an option. #DIA2024 Session #373 Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) Innovative Health Initiative (IHI) Facilitate Project TransCelerate BioPharma Inc. Society for Clinical Research Sites (SCRS) CISCRP #pfdd #CRACO #Collaborating with #patients to enable a healthier future for all. Enabling #innovation and #equity ambitions through co-creation and global collaboration. #datasharing #patientsaspartners #healthinformation #bioethics

🌟 𝗠𝗮𝗷𝗼𝗿 𝗟𝗲𝗮𝗽 𝗶𝗻 𝗦𝗷𝗼̈𝗴𝗿𝗲𝗻'𝘀 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗮𝘁 𝗢𝗠𝗘𝗥𝗔𝗖𝗧 𝟮𝟬𝟮𝟯 🌟 🧑⚕️ Thrilled to share a significant breakthrough from the OMERACT 2023 meeting, where the Sjögren's Disease Working Group, including Dr. Raouf Hajji, MD, PhD., co-founder of International Medical Community (IMC) and its Medical Lead, made crucial strides towards defining core domains for Sjögren's Disease. 📊 Sjögren's, known for its systemic impact and symptom heterogeneity, has long presented challenges in treatment development. This meeting marked a pivotal moment, with over 145 global experts pooling their multidisciplinary insights to refine and agree on a set of standardized core domains. This effort aims to accurately reflect the disease's diverse manifestations and incorporate the patient perspective more fully. 🩺 The group's methodology involved an extensive literature review and collaborative discussions, highlighting the importance of evolving current assessment tools to encompass the full patient experience. This collaborative push under the OMERACT framework signifies a shared commitment to enhancing clinical research and ultimately, patient care for those living with Sjögren's. 🤝 Let's celebrate this step forward in creating a more nuanced understanding of Sjögren's and stay tuned for more updates on this inspiring journey towards innovative treatments and improved quality of life for patients worldwide. Read more here: https://lnkd.in/dreavhWg #SjögrensDisease #OMERACT2023 #HealthcareInnovation #MedicalResearch #Collaboration #PatientCare

Adovate was named as a recipient of a Virginia Catalyst grant award. This grant is to fund the Phase 2 human studies in asthma patients of our lead compound, ADO-5030.  Thank you to our collaborators and world-leading researchers Dr. Larry Borish at the University of Virginia, and Dr. Liwu Li at Virginia Tech. We are excited to continue our work with them on this important program to develop an effective treatment for the 30-50% of asthma patients that are unresponsive to steroids, the current first-line therapy, as well as being a potential treatment for all asthma patients. A link to the press release is attached. #Adovate #VirginiaCatalyst #GrantAward #Biosciences #Innovation #Healthcare #asthma #Research #EconomicGrowth #Collaboration #UVA #VirginiaTech 

📢 Decision-making in weaning adult cardiogenic shock patients from VA #ECMO?? Clinical decision making regarding #ECLS liberation challenging and requires a well-structured weaning approach: to improve and harmonize this complex decision process, here a novel type of survey embedded into a clinical discrete choice modeling experiment. Participate to improve insights into the process of weighing multiple factors in complex weaning decisions. 🖋️ Join this 20-minute survey, approved by EuroELSO Steering Committee. 🔗 https://lnkd.in/d_Ba2ihf

I'm delighted to share the second issue of Xtalks Clinical Edge — where innovation meets expertise! This issue features a lineup of key opinion leaders from organizations such as the Clinical Trials Transformation Initiative (CTTI), National Kidney Foundation and the Lupus Foundation of America, Inc. As you dive into this issue, we trust you will be both inspired and informed, gaining a deeper respect for the leaders who are at the forefront of advancing clinical trials. #clinicaltrials #clinicalresearch #lifesciences #clinicaledge #raredisease

Super elated to be 1 out of the 15 recipients of GlobalSkin - International Alliance of Dermatology Patient Organizations scholarship to take on the EUPATI Patient Expert Training Program 2025 cohort!! 🙌🏻 Representing psoriatic disease through Psoriasis Indonesia and PsorAsia ⭐️ Many many things to learn to advance patient involvement in medicine research in Asia. #patientadvocacy #psoriaticdisease