Equitable Breakthroughs in Medicine Development的动态

Luminesce Alliance celebrates International Clinical Trials Day and the 250th anniversary of the first clinical trial by honoring trial leaders, support teams, and participants. We thank our clinical trial teams and community participants for advancing our health system and enabling new discoveries and treatments. How does Luminesce Alliance support clinical trials? We provide financial support for delivery of clinical trials and professional training opportunities, including webinars and workshops, to enhance workforce capacity and foster connections. #ClinicalTrials #HealthcareInnovation #MedicalResearchnical trials

Transforming tomorrows healthcare as to how we see healthcare today

Luminesce Alliance celebrates International Clinical Trials Day and the 250th anniversary of the first clinical trial by honoring trial leaders, support teams, and participants. We thank our clinical trial teams and community participants for advancing our health system and enabling new discoveries and treatments. International Clinical Trials Day marks May 20, 1774, when James Lind linked citrus fruits to scurvy prevention. Earlier trials include a 1537 experiment by Ambroise Paré, who treated wounds with a mixture that reduced pain and inflammation. Clinical trials have evolved significantly and are now crucial in modern medicine. How does Luminesce Alliance support clinical trials? We provide financial support for the delivery of clinical trials and professional training opportunities, including webinars and workshops, to enhance workforce capacity and foster connections. #ClinicalTrialsDay #HealthcareInnovation #MedicalResearch

Applications close in ONE WEEK for The Ehlers-Danlos Society Centers and Networks of Excellence Program, Cohort 3!? ? Organizations that are interested in becoming a Center or Network of Excellence (CNE) can now register their interest here: https://lnkd.in/e6pwhTdi ? The Centers and Networks of Excellence program will ensure critical standards of care with each center required to meet clinical, research, professional education, and patient care criteria. These Centers and Networks represent a wealth of expertise across many areas of care delivery. Together, they make a crucial step towards achieving our mission of increasing the availability of clinical services, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD. There are currently 23 CNEs in 8 countries, learn more here: https://lnkd.in/eTaDsmYu #TogetherWeDazzle #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare

Applications close in ONE DAY for The Ehlers-Danlos Society Centers and Networks of Excellence Program, Cohort 3!? ? Organizations that are interested in becoming a Center or Network of Excellence (CNE) can now register their interest here: https://lnkd.in/e6pwhTdi ? The Centers and Networks of Excellence program will ensure critical standards of care with each center required to meet clinical, research, professional education, and patient care criteria. These Centers and Networks represent a wealth of expertise across many areas of care delivery. Together, they make a crucial step towards achieving our mission of increasing the availability of clinical services, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD. There are currently 23 CNEs in 8 countries, learn more here: https://lnkd.in/eTaDsmYu #TogetherWeDazzle #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare

Now that I'm home and recovered, I've been reflecting on the wonderful few days last week spent at #ISMPPAnnual2024. There were engaging presentations, so much to be learned (77 posters!), and a rare opportunity to catch up with so many amazing people in-person. Long post incoming, but my highlights from the week included: ?? All of the labels you could pick from to add to your lanyard, including yellow for Patient Advocate, demonstrating ISMPP (International Society for Medical Publication Professionals)'s commitment to medical publications with, by, and for patients. ?? Meeting Shannon Ragland Lake after hearing her present the story of her journey to patient advocacy. Seeing representation on stage of Ehlers Danlos syndrome and Postural Orthostatic Tachycardia syndrome was emotional to say the least! ???? Facilitating a a workshop on patient partnership in publications. Featuring Patricia Segarini, PhD's superbly creative fictional treatments and conditions for an interactive pubs planning exercise which definitely won her a few laughs, e.g. hairlossinib for DAD syndrome aka hair loss from excessive screen/tablet use! ?? Kelly Ann Soldavin inviting me to to be an honorary publisher for the night and gatecrash dinner with Rachel Jenkins, Sam Cavana, Jonathan Patience, Joanne Walker, Laura Dormer, and Hamish McDougall (thank you all ??!). ?? Co-moderating an Open Pharma roundtable with Joana Osório on data sharing and reading all of the Oxford PharmaGenesis research presented at the poster session. ? Many, many more conversations and catch ups over tea/bubbles/dinner with our incredible network of medical publishing professionals. Until next year ?? #PatientAdvocate #PatientAdvocacy #NothingAboutUsWithoutUs #PatientPartnership #PatientEngagement #PatientCentricity #PatientAndPublicInvolvement #PatientAuthorship #Publishing #MedicalCommunications #MedComms #OxfordPharmaGenesis

Calling all NPC Patients and Families: your help is needed! Jackson Pountney, a PhD student at Aston University in Birmingham, needs your help. Jackson is undertaking a research project that will help us to better understand the impact of NPC on quality of life. This important work will help to advance understanding of NPC and support access to treatments in the UK and beyond. By taking a moment to support Jackson's work, you will help him to accurately communicate your experience of NPC and its impact on your life. You can participate in less than twenty minutes by completing the questionnaires in the INPDR Patient Reported Database (PRD) prior to the deadline of 14th April 2024. If you are already signed up to the PRD, you can sign in here: https://lnkd.in/ew3qAhzf If you are new to the PRD, you can learn more and quickly create an account here: https://inpdr.org/sign-up/ Further information on the project: This research project is part of a PhD programme focusing on understanding the quality of life in patients with Niemann-Pick disease type C (NPC) and their caregivers. The project will test whether the questionnaire designed specifically to assess quality of life in NPC patients and caregivers (known as the NPCQLQ) is capable of measuring this accurately and consistently. Once there is evidence to support the accuracy of the questionnaire, data collected can then be used in clinical trials and other studies to assess the impact of potential new treatments on patient quality of life. Your help is needed to make sure the questionnaire collects information accurately, and that it is able to reflect the impact on quality of life for of NPC patients and their carers. If you have any further questions please don't hesitate to get in touch with a member of the team by messenger or email at [email protected] - thank you in advance for your support! #registry #survey #opportunity #raredisease #niemannpick #inpdr

Celebrating Clinical Trials Day! Today, on Clinical Trials Day, we honor the countless individuals who have dedicated their lives to advancing medical science through their participation in clinical research. We also extend our deepest gratitude to the medical professionals, researchers, and patient advocates who tirelessly work towards safer, more effective treatments for all. Clinical trials are the backbone of medical progress, guiding us towards groundbreaking discoveries and innovative therapies. On this special day, let's also acknowledge the dedicated teams of researchers, clinicians, and healthcare providers who work diligently to ensure the safety, efficacy, and compliance of clinical trials. Their unwavering commitment to the highest ethical standards is vital in delivering trustworthy results and protecting patient well-being. Together, let's continue to raise awareness about the importance of clinical trials, advocate for inclusivity and diversity in research, and support ongoing efforts to improve trial accessibility for all. By joining forces, we can make a profound difference in the lives of patients globally. Wishing you a meaningful and impactful Clinical Trials Day. Let us stand united in our pursuit of a healthier future for all! #ClinicalTrialsDay #MedicalResearch #TogetherForHealth

?? Exciting Announcement! ?? We are thrilled to bring Phase 1 clinical studies to the Langeberg area! This marks a significant milestone in advancing medical research and providing cutting-edge healthcare solutions to our community. ??? Why is this so important? ?? Enhanced Medical Research: By bringing Phase 1 clinical studies to the Langeberg area, we are opening new avenues for medical advancements and innovative treatments. ?? Improved Patient Access: This initiative ensures that patients in the Langeberg area have access to the latest clinical trials and groundbreaking therapies, fostering a healthier community. ?? Local Economic Growth: The introduction of Phase 1 clinical studies will drive economic growth in the region, creating job opportunities and fostering a robust healthcare ecosystem. At Robertson Clinical Research Centre, we are committed to pushing the boundaries of medical science and delivering the best possible care to our patients. This development allows us to expand our reach and impact even further. Stay tuned for more updates on this exciting journey! #ClinicalResearch #HealthcareInnovation #Langeberg #MedicalAdvancements #PatientCare #RobertsonClinicalResearch #Phase1Studies #CommunityHealth #HealthcareExcellence ?? Together, we are making a difference! ??

Capturing the longitudinal medical history of 98% of the UK population, the richness and continuity of primary care records could transform clinical trial recruitment and accelerate the delivery of new treatments. And yet, despite up to 90% of all NHS health contacts occurring in primary care, it only delivers around 10% of all clinical trial activity. "We have a remarkable resource at our disposal for research; using this data to tackle the growing challenges faced by the NHS is imperative." - Professor Dame Helen Stokes-Lampard, Professor of GP Education, Birmingham Medical School We firmly believe that simplifying the path for primary care teams to actively engage in research is not just important; it's vital. The latest report from Newmarket Strategy explores the barriers we must overcome to make clinical trial delivery a normal part of the daily work in GP practices, enabling patients across the nation to benefit from the latest research and treatments. Read the report in full here: https://okt.to/SR57DO