Predictive Health Intelligence’s Post

🔎 AccessPD is a living cohort of 900 research-consented Parkinson's Disease patients, with participants range in age from 31 to 91, with the following distribution: <40: 0.12% 40-49: 1.89% 50-59: 7.57% 60-69: 28.28% 70-79: 44.02% 80 or older: 18.11% 🔎 The average disease duration is 5 years. Discover more insights from AccessPD - be sure to catch Dr. Yun Hsuan Chang presenting two posters at the #MDSCongress this week: 📆 AccessPD Registry Update: Accelerating Parkinson’s Disease Research Through Integrated Digital Solutions: Abstract #692 | September 29 | 13.00-15.00 📆 Remote DNA Collection for Parkinson’s Research: Insights from AccessPD: Abstract #1632 | September 30 | 13.00-15.00 Shoot me a message or email us at hello@umed.io to meet with our team at the congress.

"The patient community is a source of under-utilized expertise that can better inform discovery and development of rare disease therapies. Whether you’re a patient advocate, caregiver, or industry leader, this resource is a call to action to prioritize patient engagement in rare disease research." Adrienne McBride sat on the Global Genes Corporate Alliance committee that developed this new white paper. We're pleased to share this resource and call to action. Global Genes https://lnkd.in/gZH998cz

Publication of the pivotal AGAVE-201 trial in the New England Journal of Medicine (#NEJM). Delivering new medicine to appropriate patients with chronic GVHD.

We (Marko Lucijanic, Anica Sabljic, Ivan Krečak) had the privilege of contributing the Letter to the Editor to the New England Journal of Medicine (#NEJM) in which we comment on the safety aspects of #belantamabmafodotin, a potent novel treatment for patients with relapsed #multiplemyeloma. As multiple #myeloma remains a challenging disease, we are very honored to engage in this important discussion. NEJM Group #cancerresearch #immunotherapy https://lnkd.in/evYe8FzN https://lnkd.in/evTwke_n

🌿 **Key Insights from Dr. Daniel Warren on Lyme Disease Diagnosis** 🌿 I recently came across an enlightening discussion featuring Dr. Daniel Warren of Envita Medical Centers on the "Lyme Time" podcast, highlighting critical yet often overlooked factors in Lyme disease diagnosis. 🦠 Dr. Warren, a Lyme Literate Medical Doctor (LLMD), emphasizes a crucial point: many individuals undergo testing for Lyme disease, but diagnoses frequently slip through the cracks. This underscores the substantial challenges we face in diagnosing Lyme disease, owing to its diverse and sometimes elusive symptoms. 🩺 The takeaway? A comprehensive, multidisciplinary approach is paramount for accurate diagnosis and effective treatment. In the era of precision medicine and personalized healthcare, can we redefine diagnostic standards and protocols to better identify and treat such complex conditions? Let's connect and discuss how we can collectively advance our strategies in diagnosing and managing Lyme disease. Your insights could be invaluable! 👇 Drop your thoughts below! 👇

🚨 Big news from Vesalio! 🚨 We’re launching a U.S. clinical study for our pVasc™ Thrombectomy System, designed to address the challenges of removing thromboemboli in acute limb ischemia (#ALI). The #pVasc Study will gather real-world data to help optimize revascularization strategies in supporting patients with peripheral arterial disease (#PAD). We’re looking forward to connecting with industry experts at the upcoming TCT, VIVA, and VEITH conferences to share insights on our advancements and discuss the future of vascular health. Read Press Release: https://lnkd.in/g9ysv9Wd This is just the beginning—stay tuned for more updates as we continue pushing the boundaries of endovascular innovation! 💡 #DoTheDropZone #PeripheralThrombectomy #AcuteLimbIschemia #PeripheralArterialDisease

🌟 Exciting News! 🌟 Yesterday morning, Dr. Berglund delivered an insightful presentation to the CDC and Prevention Coordination and Maintenance Committee on Hao-Fountain Syndrome’s need for a unique ICD-10 code. This is a monumental step forward for the Hao-Fountain community! Having a distinct ICD-10 code for Hao-Fountain Syndrome will be a game-changer. It ensures accurate diagnosis, improves patient care, and facilitates specialized research and treatment options. It also raises awareness and fosters understanding of Hao-Fountain Syndrome, paving the way for better support and resources for those affected, making the invisible visible. The process for rare diseases to obtain a unique ICD-10 code has proved to be very difficult, however, we remain hopeful that our presentation has moved the needle and that we will receive our ICD-10 code. A huge thank you to COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental for their unwavering support in making this possible. Your dedication to advancing rare disease research and patient advocacy is truly commendable. Together, we are making strides towards a brighter future! To learn more about the importance of an ICD-10 code, listen to this podcast by Effie Parks of Once Upon A Gene joined by Amber Freed, founder and CEO of Slc6a1 Connect, and our Executive Director. https://lnkd.in/e4NqcxSF #HaoFountainSyndrome #MedicalAdvancement #ICD10 #RareDisease #CombinedBrain #HealthcareInnovation

📣 NEW! LightCure Consortium receives Horizon Europe Grant. 💡 Congenital Hyperinsulinism International (CHI) is excited to announce we are part of a new 11-member research consortium called LightCure. The LightCure Consortium is developing a targeted photodynamic therapy, that one day could be a promising treatment for congenital hyperinsulinism (HI). 💙 This project is made possible by a 72-month-long grant of just over €8.2M from the European Union research arm Horizon Europe and encompasses CHI’s work to strengthen patient engagement and raise worldwide awareness of HI and its myriad challenges. 🔗 You can find more information about this exciting project at https://lnkd.in/eVq-2Faa #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Going to a good discussion on the benefits of establishing a patient database and mining the data.

Offering convenient options for participants to access clinical trials under PI guidance not only helps studies finish on time but also improves recruitment and retention of diverse populations by reducing geographical and logistic barriers. In our recent webinar, Dr. Rohit Aggarwal, a leading PI at the University of Pittsburg, highlights how the use of mobile visits in an interstitial lung disease study successfully expanded access and improved trial outcomes. Watch the full discussion here: https://lnkd.in/ek3BnXB #ClinicalResearch #HealthcareAccess #DiversityInTrials #MobileVisits #CommunityResearch