The Patients Association’s Post

Multiple Sclerosis has wide ranging impacts on patients’ and caregivers’ lives resulting in a significant socioeconomic burden. In a new survey-based patient study, conducted on behalf of Merck KGaA, #CRALifeSciences Tim Wilsdon, Artes Haderi and Elaine Damato provide new evidence on the impact of earlier access to highly effective disease-modifying treatments with more convenient administration frequency on the economic and societal burden reduction. We document the impact on patient well-being, mental health, family life, employment, and the burden on caregivers, and discuss policies to recognize the value of treatments and support patient choice on treatment and care options. To read the full report, click here: https://crai.news/frs

Early intervention is crucial for those living with #schizophrenia, as progression may lead to functional decline. Read how Cerevel is helping to address this unmet need with our EMPOWER clinical trials: empowerstudies.com

#STUDY: 85% of people with #MultipleSclerosis report challenges with everyday activities. This is according to a new survey of #MyMSTeam members, which also highlights the realities of MS with patients' own words. This type of feedback is crucial for #pharma and #HCPs to understand the full scope of MS and optimize treatment approaches. We're excited to present our research poster covering the far-reaching impact of MS at the Consortium of Multiple Sclerosis Centers (#CMSC) annual meeting this week. To connect with us at CMSC, DM Dianna Higgins (Cronin) or email partnerships@myhealthteam.com. https://lnkd.in/gp-3ZaEB #CMSC24 #CMSC2024 #MultipleSclerosis #MyMSTeam #Healthcare

🎥 Why Equity in Diabetes Research Matters At Superior Clinical Research, we’re committed to advancing healthcare for everyone. In this powerful video, Briana White shares her personal perspective on why equity in diabetes research is so important. Diabetes disproportionately affects marginalized communities, yet these groups are often underrepresented in clinical trials. Briana highlights how diverse participation isn’t just about fairness—it’s about improving outcomes and ensuring that treatments work for all people, regardless of their background. 💡 Let’s change the narrative together. By prioritizing equity, we can drive research that truly represents the diverse world we live in. 📢 Watch the video and join the conversation! What steps can we take as a community to make clinical research more inclusive? Share your thoughts below!  #HealthEquity #ClinicalResearchSite #DiversityInResearch #SuperiorClinicalResearch #DiabetesResearchWeek #MythBusting #DiabetesAwareness #ClinicalTrials  #DiabetesWeek #ClinicalResearch, #SuperiorDiabetesCare #ResearchMatters

A newly released RAND report commissioned in partnership with BrightFocus Foundation, Alliance for Aging Research, and National Down Syndrome Society shows that boosting research investment into the health and wellbeing of adults with Down syndrome would improve their quality-of-life outcomes, reduce caregiving costs, and extend the lifespan of adults with Down syndrome. “This report illustrates conclusively that early investment in care and treatment will have a meaningful impact on the health, wellness, and longevity of adults with Down syndrome,” Hampus Hillerstrom, president and CEO of LuMind IDSC said. “Not only are the conclusions of this report important to note, but the data itself will be of use to researchers, foundations, and pharmaceutical and biotech companies that may be considering research into the significant medical needs of adults with Down syndrome.” Learn more and find the full report online: https://lnkd.in/e5DwgaVf

Bold moves across the globe towards #ending #Parkinson's is the best approach for the patients needs! Joining forces between public and private collaborations and make dedicated efforts for #Parkinson’s #disease to develop more effective pathways for #treatments and cures can finally spark new and improved models for #patient care. It fuels our #hope at Koios Care that by #patient-#centric #passive sensing, superior #Parkinson's #QoL #assessment and self #empowerment we can accelerate disease modifying #drugs to market and #optimize the utilization of current ones. Patricia Van Rompuy Konstantinos Kyritsis Kris Schellens Gaëtan Garraux, MD, PhD Apostolos Moustaklis Vasileios Papapanagiotou Gregor Strobbe Jean-Briac Prevost

Having read this article, I was shocked at the findings that women are drastically underrepresented in high-risk medical implant studies, with only 33% participation overall and even less in crucial cardiovascular trials. This gap limits our understanding and puts female patients at risk. It's time for proactive change to ensure equitable research and safer healthcare outcomes for all. For anyone interested in the article, I have attached it below.

Diversity in clinical trials isn’t just a recommendation - it’s a necessity. Treatments must be tested on populations that represent the diversity of the populations they’re designed to help. A recent study by the Leonard Davis Institute of Health Economics showed that Medicaid expansion states requiring coverage of routine trial costs saw a 5.3% rise in Black and Hispanic participation in oncology trials. This underscores a powerful truth: when we eliminate financial barriers, we can increase diversity and inclusion. By removing barriers like financial burden, we can create clinical trials that truly reflect the diverse populations they aim to support. Diversity in trials isn’t just about fairness...it’s about generating better, more representative data to advance medical innovation for all.

🔬 The wait for effective treatments is agonizing for patients with rare and life-threatening diseases. A research conducted by Merkel et al. (2016) highlights their unmet needs: delayed diagnosis, limited treatment options, and significant impact on quality of life. As leaders, we can change this narrative. Collaboration with patient advocacy groups (PAGs), innovators, and investigators is key. 🤝 Why Partner? 👥 Patient Advocacy Groups: They understand patient experiences, shaping research priorities. 🔬 Investigators & Innovators: Their expertise drives the creation of new therapies. Success Story: The RDCRN Model A real-world example: The Rare Diseases Clinical Research Network (RDCRN) proves collaboration works. Here's how: ✅ Early Patient Involvement: Including patients from the start leads to better studies. 📢 Communication and Outreach: Patient groups excel at educating patients and boosting trial participation. 💰 Funding and Prioritization: They can influence research focus and even fund specific projects. 📚 Education and Dissemination: Collaboration ensures clear, accessible materials for patients and families. 🚀 Faster Recruitment: Patient groups are the #1 source for clinical trial referrals. The Impact: RDCRN shows stronger, faster research due to investigator-patient partnerships. Let's join forces! By prioritizing collaboration and patient-centered approaches, we can make a real difference. #RareDiseases #ClinicalTrials #Partnerships #PatientAdvocacy

Update from UK Government - Office for Life Sciences, Department of Health and Social Care and Department for Science, Innovation and Technology UK Life Sciences Vision Missions: Bringing together industry, academia, the third sector and the NHS to tackle healthcare challenges such as dementia, cancer, mental health, obesity and addiction. The 2021 UK Life Sciences Vision committed to focusing on specific Missions to tackle the UK’s biggest healthcare challenges. The Missions are intended to apply a Vaccine Taskforce-type approach by bringing together industry, academia, the third sector and the NHS to collaborate to make progress in these disease areas, by advancing early disease prevention, diagnosis, treatment, monitoring, and developing breakthrough products and technologies to save lives. In 2022, the UK Government launched five of these Missions in the disease areas of dementia, cancer, mental health, obesity and addiction - with over £235 million of government investment. In 2023, the UK authorities appointed world-leading experts to be the Missions Chairs to shape the direction and drive progress. #LifeScienceClusterDenmark; #Sundhedsministeriet; #Erhvervsministeriet; #TheTradeCouncil; #LIF; #Medicoindustrien; #dklifescience; #DanskErhverv; #DanskIndustri; #DanskBiotek; #DanskeRegioner; #HealthcareDENMARK; #InvestinDK; #DKMA; #DanishCare; #HealthTechHubCopenhagen; #DanishHealthDataAuthority; #DanishHealthAuthority;