IAVI’s Post

#HTAi2024Sevilla afternoon of Rare Disease Interest Group workshop in full swing. Insightful presentation from Farzana Malik Ph.D and Martina Garau presenting initial results of systematic literature review of economic modelling challenges in rare diseases and asking about priorities for future work. They have another workshop with great speakers tomorrow discussing this further. Vanessa dos Reis Ferreira, PhD MBA and Veronica Lopez Gousset, MPH leading discussion about changes needed to the HTAi patient group submission form for medicines. How do we better capture this issues that matter most to patients?

"The establishment of a national center for rare diseases is crucial – there must be a place where all diseases are defined and a database of medical information …” During an expert workshop dedicated to rare diseases, Professor Piotr Fiedor, an expert from the Ministry of Science, emphasized that Poland does not fully participate in the European system for rare diseases, which puts us at a disadvantage. He highlighted the urgent need to create legal regulations enabling the exchange of medical data at an international level. "The establishment of a national center for rare diseases is crucial – there must be a place where all diseases are defined and a medical database, where AI can be utilized for diagnosing both children and adults. If we do not do this today, we will fall behind other countries." Professor Fiedor also pointed out Poland's potential in the field of clinical research, stressing that the creation of a research hub for rare diseases could significantly improve our position in this area. pl: https://lnkd.in/dQNE6xah #RareDiseases #IRSS

Our latest issue of Spotlight on CITF-funded Research is now available. We discuss the most recent Seroprevalence in Canada data showing that infection-acquired seroprevalence decreased slightly to 81.4% by December 31, 2023. We also cover several CITF-funded studies, including one published in Emergency Medicine Journal, which found that in the first two years of the pandemic, one in 10 patients had an unscheduled emergency department return visit for COVID-19 within 30 days. Another study in Science of the Total Environment (STOTEN) demonstrated that the ratio of SARS-CoV-2 wastewater signals to clinical case counts (WC ratio) would add more value to the contribution of wastewater-based surveillance. Researchers will be interested to know that our CITF Databank dashboard now has an advanced search function: you can now select up to five categories at a time when filtering for participants’ data. More: https://ow.ly/LTyt50QIPWw #CITFDatabank

The #reviewarticle “Analysis of #LRBA #PathogenicVariants and the association with functional #ProteinDomains and clinical presentation” published in the #PAI_Journal is available! Here: 🔗 https://lnkd.in/drs2Y8Ty

🔬✨ Last week, ASM successfully concluded a dynamic 5-day workshop in Mexico City, Mexico, dedicated to empowering laboratory technologists and epidemiologists from national and state reference laboratories. Focused on enhancing skills in susceptibility testing for Bordetella pertussis utilizing disk diffusion and erythromycin-PCR, the workshop bolstered capabilities in clinical specimen collection and the detection of B. pertussis through culture and real-time PCR methodologies. This training initiative elevates antimicrobial resistance surveillance efforts to facilitate swifter identification of resistant pathogens. This acceleration is pivotal in fortifying public health responses, effectively curbing the spread of resistant strains. Maritza Urrego Victor Silva Vargas Vlademir Cantarelli Efraín Andrés Montilla Escudero Ana Raquel Da Costa #asm #globalhealth #antimicrobialresistance 🌐

Part 2 of our #eWHORMFacts series! Did you know that the WHO’s strategy for the control of Soil-Transmitted Helminths (STH) recommends that endemic countries measure the success of their drug administration programmes through epidemiological assessments, yet training and quality control programmes for laboratory diagnosis of STH are limited in these regions? Asking this question is our partner Erasmus MC. In eWHORM, Erasmus MC and their partners are developing a virtual training tool for the microscopic detection of blood- and intestinal parasites. This tool can also be used for individual quality assessment of the microscopic examination skills of laboratory personnel. For more information about Erasmus MC's involvement in #eWHORM, click here: 🔗 https://lnkd.in/dXgCam7d #NTDResearch #GlobalHealth #NTDs #NTDElimination Global Health EDCTP3

🌍 Embracing a Shift in African Clinical Research: With Africa facing a dual healthcare challenge of infectious and non-communicable diseases (NCDs), there's a critical need to expand research focus. Our commentary, authored by Isaac B. Agbugblah of Mursi Biosciences, delves into this imperative shift towards NCD clinical research. African clinical sites are eager to broaden their horizons, recognizing the profound impact such studies can have on health outcomes. Discover how global sponsors can play a pivotal role in driving this transformative journey. Read more here: [ https://lnkd.in/eDPbwhS3] #HealthEquity #GlobalHealth #NCDResearch 🌍

In #CTGjournal: Clinical Long-Term Outcomes of Patient-Reported Outcomes in the Prospective Real-World Tofacitinib Response in Ulcerative Colitis (TOUR) Registry Herfarth, et al. ➡️ bit.ly/48LIU0d

We are thrilled to announce the official launch of the European Rare Diseases Research Alliance (ERDERA), spearheaded by the French National Institute of Health and Medical Research (INSERM). #TIF is proud to be a partner in this large-scale collaborative effort. ERDERA marks a monumental step forward in advancing #research and #care for #rarediseases across #Europe, with the objective is to significantly improve the #health and well-being of the 30 million people living with rare diseases in Europe, including approximately 30,000 individuals affected by #thalassaemia. The Partnership is committed to creating a robust Rare Diseases (RD) ecosystem by fostering patient-centered research, developing innovative diagnostic methods and pathways, and leading the digital transformation that bridges care, patient data, and research. #TIF’s role will be pivotal in disseminating knowledge locally within #Cyprus and encouraging our EU network to actively participate in ERDERA-led activities and funding proposal calls. Stay tuned for more updates! Read more at: https://lnkd.in/dT37DRUx European Commission #EU4Health #HealthInnovation

Learn more about challenging clinical situations in the management of hematologic malignancies at the 28th Annual International Congress on Hematologic Malignancies from February 29 – March 3! Register: https://bit.ly/3PyEIZ9 #gotoPER #HEM24