Fundació de Recerca Sant Joan de Déu’s Post

There's still time to gain valuable insights into the realm of genomic testing in the Community of Practice call today at 12 p.m. ET! Learn how FHIR is being used to better access data for clinical care and research, how interoperable genomic data sharing enhances research efforts and enables precision medicine at the point of care, and much more. We can't wait to share this informative session with you. Register here: https://bit.ly/3YBtqr6 #CodeXHL7FHIR #interoperability #genomics

📢 Next Tuesday, August 1 at 11:00 AM EST, join the conversation on "Clinical Trial Site Burden & Clinical Research Associate Burnout - How Studies Suffer," presented by Xtalks. We're diving deep into the significant impacts of burdensome, outdated, and inefficient processes on clinical research sites and CRAs. These challenges result in trial site burden, burnout, and industry turnover. We're confronting these issues head-on. 💡 Our focus will be on transforming these inefficiencies into streamlined processes by harnessing innovative technology platforms, such as CRIO eSource, a site-based, protocol-driven eSource system. eSource holds the potential to drastically improve the handling of complex protocols, simplify multiple logins, and reduce workloads. 🔗 For more details about the webinar and to reserve your spot, please visit our event page at the following link 👇 https://lnkd.in/gT6je7qT

For those looking for in-depth insight on CV and metabolic patients, the Veradigm Clinical Data Registries can answer questions many others can't. See the examples in the publications library in our blog.

All of the transcripts from the CMS "Patient-Focused Listening Sessions" are now archived on the Cost Curve website (https://lnkd.in/ddS6UfcZ). I looked back over the 10 sessions in today's newsletter, concluding that the listening sessions were not only a missed opportunity to take patient input seriously, but also something of a failed test for CMS' ability to thoughtfully begin the implementation process. https://lnkd.in/gsn_4aqM

🌐 DATAcc by DiMe’s Library of Digital Measurement Products continues to grow to address ongoing digital measures work and define important measurement parameters for patients, their care partners, and physicians to speed up research. 🤝 We couldn’t be more thrilled to partner with The Michael J. Fox Foundation for Parkinson's Research and the Critical Path Institute (C-Path) to include digital solutions to support Parkinson’s disease (PD) research and care communities in DATAcc’s Library of Digital Measurement Products. The library is an interactive, searchable database containing digital measures of physical activity (PA), Alzheimer’s disease and related dementias (ADRD), and now, PD. 📚 The library encompasses high-quality digital clinical measures and measurement tools for PD. There is growing recognition of the importance of digital measures in PD, leading to increased efforts to close the gap and harness the potential of digital innovation in managing the condition. 🌷 This Parkinson’s Disease Awareness Month, we are deeply honored to contribute to accelerating and advancing PD research and hope these efforts will be of tremendous importance in advancing the field. 🔗 Access the library now: https://lnkd.in/ey5KyfGE #ABCsofPD

Open call: #Grow your #health #business in the USA with the EIC Soft-landing programme 🇺🇸🇪🇺🌏 *If you are EIC beneficiary(also Seal of Excellence Horizon 2020 or Seal of Excellence Horizon Europe) and you are working in health and life sciences this call it's for you! *By this call the European Innovation Council (EIC) invites EIC companies to scale their business in USA 🇺🇸 with the support of the most prestigious local business partners. EIC-funded companies working on innovative advancements in the following fields:  #Biomanufacturing #Biotechnology #Brain Health Cell and #Gene Therapies/#Genome Editing #Chronic Diseases #Clinical Trials Diagnostics and Personalized #Medicine Digital #Health Next Generation #Biotherapeutics #Oncology Patient #Advocacy #Rare #Diseases 15 EIC #companies selected will enjoy the support of high-level local domain experts, access to dedicated #pitching and networking activities, targeted market insights and warm introductions to the most relevant stakeholders within the San Francisco/Silicon Valley #ecosystem including high level #investors, #corporates and %innovation %hubs. This service is free of charge for EIC beneficiaries and includes six weeks of pre-departure preparation followed by one immersion week in San Francisco and Silicon Valley from the 19th to 24th May 2024. Deadline: 19/05/2024 More details: https://lnkd.in/enr8Ciew

“I’m a smart man but I’m not a doctor. You need to explain things to me in a common language.” – Ignacio Edenburg, #MF patient, member MPNRF Patient Impact Council  Empowering patients at every stage of the R&D lifecycle bring increased impact. But it won’t have effects on patients’ daily lives if they don’t understand what the research shows and its implications. A care team is honoring the quality of life and future of their patients by explaining updates in MPN symptom management, NCCN Guidelines (National Comprehensive Cancer Network), newly published research, and new or emerging therapies. The patient can then be a true partner in their care, making informed decisions and feeling empowered in their journey.  Industry & research professionals, how can we simplify complex terms for better patient dialogue? Share your insights below.  [ Join our network: https://mpnrf.info/3SRq8h2 ]

DataToCare® Desktop - New Patches Available & Improved Functionality! New patches for DataToCare® Desktop have just been released and deployed in Cameroon, Morocco, Cambodia, DRC, and Philippines. These patches enhance a series of exchange functionalities with GeneXpert, specifically with Dx 6.5 test order transmission. In addition, DataToCare now allows to easily check the interface version information with the instruments. Overall, these updates enhance DataToCare® Desktop experience and further facilitate the capture and exchange of diagnosis data. For detailed information about the new features and bug fixes, you can refer to https://datatocare.org/ Everyone Matters #Cameroon #Morocco #Cambodia #DRC #Philippines #DataToCare #HealthcareIT #NewRelease #PatchUpdate

Supported by global data from over 100 million patients, Phesi is a leading player in #rarediseases. With well contextualized patient data, we allow our colleagues in rare disease #clinicaldevelopment to see the patients digitally before they start their #clinicaltrials. This helps them to identify suitable investigator sites with higher level of accuracy, optimize design of the trial, and potentially lead to external control arms. #rarediseaseday