Leon van Wouwe’s Post

Last week, the Alpha-1 Europe Alliance asbl held its Alpha-1 Antitrypsin Deficiency Patient Conference, which offered great insights into the current state-of-play of understanding and treatment for the disease. Leon van Wouwe was there and reports on the importance of highly predictive outcome models that can help doctors risk stratify patients better and allow more proactive interventions before more significant lung damage occurs. #aatd #alpha1europealliance Volv Global SA #volvglobal #predictionmodels #outcomemodels #patientstratification #riskstratification #difficulttodiagnosediseases #rarediseases

Last week, the Alpha-1 Europe Alliance asbl held its Alpha-1 Antitrypsin Deficiency Patient Conference, which offered great insights into the current state-of-play of understanding and treatment for the disease. My colleague Leon van Wouwe was there and reports on the importance of highly predictive outcome models that can help doctors risk stratify patients better and allow more proactive interventions before more significant lung damage occurs. #aatd #alpha1europealliance Volv Global SA #volvglobal #predictionmodels #outcomemodels #patientstratification #riskstratification #difficulttodiagnosediseases #rarediseases

👏 A successful meeting of the Clinical Trials Coordination Group this week!   🔬 There were a lot of important topics on the agenda, including: the transition of all ongoing clinical trials in line with the new European regulation (Clinical Trials Regulation) by the end of January 2025, and an update on ongoing projects around the acceleration of clinical trials in emergency situations, such as the corona crisis.    👩⚕️ There was also discussion about the possibility for advice just before submission of a clinical trial and how these could be linked to existing advisory procedures.   🇧🇪 Did you know that Belgium is one of the pioneers of clinical research within Europe? Thanks to this intensive cooperation, innovation and research are further stimulated and we continue to make Europe attractive for setting up clinical trials. #EU2024BE #clinicaltrials

Heading to the #DIA Europe 2024 in Brussels? 👀 Meet the #JNPMEDI team of experts; Jayden (Joon Hyuk) Lim and Bijesh Manikoth! We can't wait to engage with our valued customers, partners, and industry peers at this fantastic event! Let's discuss how our #MavenClinicalCloud solutions drive innovative clinical trials and achieve your study goals together! See you there! 👋 #DIA #DIAEurope2024 #JNPMEDI #MAVEN #MavenClinicalCloud #DecentralizedClinicalTrials #DigitalClinicalTrials #DCT #ClinicalTrials

Today is the International Hereditary Angioedema (HAE) day #HAEday We are proud to support patients, their loved ones and the #HAE community as a whole, who are affected by #HereditaryAngioedema. HAE can cause recurrent, unpredictable attacks of painful, disabling swelling in various parts of the body Swelling of the skin usually affects the face, hands, feet and genitals. Severe swelling can make it hard to hold items or even walk. HAE attacks can be unpredictable and dangerous. A HAE attack affecting the throat is potentially life-threatening, due to the risk of Suffocation ! To learn more about this Rare Genetic disorder affecting 1 in 50.000 people worldwide, visit Knowhae.com #rare #Raredisease #Takeda #HAE #HAEday

It is a dream come true; I know it sounds like a shallow soundbite, but it is anything but… 6 years ago I had such a dream. The dream of patients being in control of their data, being able to measure how they are doing in a way that is understood by healthcare providers and being able to be to part of any decision that affects their lives. Not out of pity or compassion; but because they have the data and the evidence to prove their point. 6 years ago the #EHDS was not even at the horizon; however there is a tremendous opportunity for synergies now. The Pan-European Observatory can serve as a forum to achieve consensus on what can be measured digitally in routine care in order to improve care and fuel the EHDS with standardized outcome data. At the same time, the data access framework developed through the H2O project offers a blueprint on how to manage data by relying on the Patient Agreement. H2O through the leadership of the Pan-European Health Outcomes Observatory can pave the way on how to build the EHDS on the foundation of 'Data Trusts' and multi-stakeholder consensus on what to measure and how.

📢Following the launch of the pan-European Health Outcomes Observatory, we are thrilled to introduce the newly appointed members of the Board. Congratulations to: 🔹 Dr Jørgen Schøler Kristensen (Chairman of the Danish Medicines Council), who will serve as Chair 🔹 Dr Linetta Koppert (Dutch H2O), who will serve as Vice-Chair 🔹Andreas Christodoulou (European Patients' Forum Board Member), who will join the Board as Treasurer; and 🔹Board Members Dr Matthias Rose (German H2O), Dr Pilar Rodriguez Ledo (Spanish H2O), and Héctor Röthlisberger. This marks a significant milestone for the H2O initiative, now including the pan-European Observatory and national observatories in Austria, Germany, the Netherlands, and Spain. We are eager to expand further, promoting patient empowerment and advancing health research across #Europe and beyond. Read our press release on the launch of the pan-European Health Outcomes Observatory 👉 https://lnkd.in/eMnc8WTF Innovative Health Initiative (IHI), EFPIA - European Federation of Pharmaceutical Industries and Associations, European Patients' Forum, Trial Nation, JDRF International, Teamit #InnovativeHealthInitiative #HealthcareInnovation #DataAnalytics #HealthOutcomes #HealthResearch #DataDrivenHealthcare #InnovateHealth #HealthcareRevolution

🎤 Science 37's Alina Wherry, Director of Clin Ops, will be presenting at SCOPE Europe on Tuesday, Oct 29 @ 4:07 PM. Join us for the session on "Unlocking the Power of Decentralised Clinical Trials (DCT): Navigating Trial Design Considerations in Modern Models." We can't wait! #SCOPEEurope #SCOPEEU #SCOPESummit #clinicalresearch #clinicaltrials #clinicalstudies

Fantastic discussions on #pricing, #costeffectiveness and #reimbursement of innovative health technologies with colleagues from the ASCERTAIN consortium - a recurrent theme: how to incorporate the #environmental #dimension? #access2meds #climateimpact

#ATE24 is not to be missed! We're going to dig in to the biggest challenges with delivering ATMPs in Europe, from development to manufacturing to commercialisation. Sessions dig in to the promise of AI/ML and digitalisation for cell and gene therapy, highlights on breakthrough cell and gene therapy programmes, and spotlights on various regions of Europe. Check out the "Early Bird" price below, which is the lowest possible for this brilliant meeting. #ATE #AdvancedTherapiesEurope #celltherapy #GeneTherapy #cellandgenetherapy #advancedtherapies