$20 million NIH grant will support a team led by Tufts University School of Medicine researchers to enroll one of the U.S.’s largest prospective studies of Lyme disease patients. https://lnkd.in/gwC9HftY
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We are so excited to announce that registration is now open for the 2025 Cholestatic Liver DIsease Summit which will be held June 26-28, 2025, near Denver, CO. This event is the first of its kind pulling together 3 cholestatic liver disease communities and their organizations in partnership with Children's Hospital Colorado: Alagille Syndrome (ALGS) w/ Alagille Syndrome Alliance, Progressive familial intrahepatic cholestasis (PFIC) w/ PFIC Network, and Biliary Atresia (BA) BAREinc.org which will all be in attendance with representation for PSC families w/ PSC PARTNERS SEEKING A CURE. AND, we welcome and want to include more! You won’t want to miss this outstanding event which includes a scientific meeting, a research roundtable for all stakeholders, and a conjoined family conference with disease specific breakouts and combined general sessions meaningful for all. Kids camp, too! What will you experience when attending this life changing event? - A deeper understanding of scientific advancement & movement in cholestatic liver disease - Expert world-renowned physicians in rare cholestatic liver disease - New and expert scientists and researchers trying to unlock scientific advancements - Opportunities to learn about FDA approved medications, clinical trials, industry news important to you and your family - New Friends - Patients and families in rare cholestatic liver disease just like you - Tools and resources to arm you for better navigation of diagnosis - Disease education specific to each disease state represented - Mental health support with available support group breakouts - The opportunity to strengthen and build a solid support network Sharing your experiences and being heard!! Registration includes food during the event hours, kids camp, attendance at all event segments, exposure and interactions with experts across science and research, industry, advocacy, and medical institutions with physicians specialized in treating cholestatic liver disease. Family scholarships are available to help cover some costs associated with attendance, if needed! Have questions? Email us at [email protected]. Register, here: https://lnkd.in/gf3sgTW4 #liverdiseasesummit
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📢 2024 #WorldHepatitisDay is drawing near. Looking back at the past one year, it has been 365 days of continuous innovation in #liverdisease research and treatment. For this year's World Hepatitis Day, VitalStar will continue to collaborate with Alliance of New Drug Development for Liver Diseases (ANDDLD) and DrugTimes, to review the major progresses in liver disease prevention and treatment over the past year. Ten experienced experts will focus on the breakthroughs and achievements made in the field of liver disease, discuss the latest developments and trends, and introduce the application scenarios of the new generation of humanized liver mice. The experts will brainstorm from the aspects of basic research, #clinicalresearch, and new #drugdevelopment, aiming to contribute to global liver disease prevention and treatment efforts. On this special occasion, let us join hands, with science as our wings and humanity as our heart, to continue to promote comprehensive progress in liver disease prevention, diagnosis, treatment, and care. Time: July 23, 2023, 14:30-18:00 (Beijing Time) Format: Webinar Theme: Humanization Powered, New Chapter in Liver Research Language: Chinese Hot Topics: (1) Significant Events in the Liver Disease field in 2024 (2) New Developments and Trends in the Field of Liver Disease Research (3) Application Scenarios of the New Generation of Humanized Liver Mice For detailed info, please visit https://lnkd.in/ggwD5t-C Thank you very much!~
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So happy to celebrate the publication of this brilliant original research article on a randomized controlled trial in pediatric Crohn's disease. Jongsma et al. discovered that profiling of immune proteins in serum at diagnosis can predict a patient’s response to treatment. This strategy may help doctors identify subgroups of patients with harder-to-treat disease, which could enable these patients to receive more intensive treatment and improve their chance of achieving disease remission. This excellent team of clinicians and researchers sent us a really well-written manuscript. However, they gave us the challenge of shortening the length of the text by over 50% to meet the target journal’s instructions to authors, without losing any of the key points or messages within the text. This included making the figure legends more succinct, helping the authors decide which information could be moved to the Supplementary Information, and some clever word trickery to make the sentences shorter without changing the meaning. We also helped by providing an outsider’s perspective, to ensure that the complicated data was described clearly and that all of the key findings were communicated well. Congratulations to the research team from Erasmus Medical Centre on this well-deserved success! (Links to our customers’ papers are only shared with the authors’ permission)
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I am pleased to share my first co-authored publication (with Grace Rosner) from my PhD at Dartmouth. I joined this project during my rotation in the Sladjana Skopelja-Gardner lab, building on Grace's foundational work, further analyzing the data, and contributing to key findings that shaped the study's direction. In this study, we used advanced urinary biomarker analysis and identified early signs of subclinical kidney damage in adult people with cystic fibrosis (CF) — damage that traditional diagnostic tests often fail to detect. Our findings reveal a strong association between lung infections, particularly those caused by Pseudomonas aeruginosa, and increased levels of kidney injury markers, along with a decline in lung function. Additionally, our results highlight the role of neutrophil activation as a key link between lung inflammation and kidney injury. This study addresses an important but often overlooked connection between lung infections and kidney health in CF, offering valuable insights into disease progression and potential intervention points. I am grateful to my mentor, our collaborators, and the funding sources that supported this research. I look forward to building on these findings and contributing further to this field throughout my PhD. Read our work here: https://lnkd.in/d8bnB2Bn #CysticFibrosis #KidneyHealth #LungKidneyAxis #Research #PhD
Lung-kidney axis in cystic fibrosis: Early urinary markers of kidney injury correlate with neutrophil activation and worse lung function
sciencedirect.com
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Fantastic to see LifeArc investing £40m in research centres in the UK focused on rare diseases. There are going to be four conceptual centres, each with a specific focus: (i) respiratory diseases; (ii) kidney diseases; (iii) mitochondrial diseases; and (iv) the acceleration of rare disease trials. The last one is particularly interesting and includes creating "a rare disease trial recruitment portal and will design and deliver trials in partnership with patients". It looks like each centre will involve a number of different academic institutions and NHS trusts to help harness the best of the rare disease community in the UK. LifeArc have excelled over the last 10 years or so in early-stage translation in the UK. There is significant unmet need in rare diseases and so I'm looking forward to seeing the impact of this investment. https://lnkd.in/eYqrUZJY #raredisease #medicalresearch #lifesciences
LifeArc launches £40m research centres that will unlock new tests, treatments and cures for people living with rare diseases - LifeArc
https://www.lifearc.org
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Meet global health researcher Jyothi Purushotham, PhD—a postdoctoral researcher at Scripps Research uncovering how pathogens interact with their hosts. Through her work on Lassa fever and COVID-19, Purushotham deciphers the mechanisms that drive infection, transmission, disease progression, and pathogen evolution. Her findings guide the development of targeted therapies to improve patient outcomes worldwide. In this Q&A, she shares insights into her research, leadership in global health studies, and dedication to fostering Diversity, Equity, and Inclusion in science. More: https://ow.ly/avMa50UurUH
Community Corner: A Q&A with global health researcher Jyothi Purushotham - Scripps Research Magazine
https://magazine.scripps.edu
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Check out this in-depth article by Betsy Ladyzhets in The Sick Times covering the NIH”s RECOVER initiative. https://lnkd.in/eiuy5GNK “In February 2021, the National Institutes of Health launched a new $1 billion initiative to study Long Covid, a chronic disease that has changed the lives of millions of Americans…Three years later, the NIH initiative, called RECOVER, has not met these goals, according to a detailed review of budget and planning documents obtained through the Freedom of Information Act and shared with Long Covid experts.” “One foundational problem is that the NIH did not select scientists with “an established background in conducting research on post-acute infection syndromes” to lead the initiative, said David Putrino, Nash Family Director of the Cohen Center for Recovery from Complex Chronic Illness at Mount Sinai…” “Researchers who spent their careers studying these diseases — such as Myalgic Encephalomyelitis (ME), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) — before 2020 were poised to use their expertise for Long Covid, scientists and patient-advocates agreed. The ME community, in particular, anticipated in early 2020 that some people infected with the coronavirus would later develop chronic disease. Yet the NIH did not tap these experts to lead RECOVER. The teams selected 'did not have experience in this arena before the pandemic,' said Jaime Seltzer, scientific director of #MEAction. This lack of experience 'dramatically and demonstrably' impacted how they designed the research as well as their interactions with the Long Covid community, she said.” The article goes on to discuss original goals and timelines and how they have not been met, including the goal that “researchers would engage with Long Covid patients as a central facet of the program.” “Disappointed in RECOVER’s slow progress, lack of novel research, and underwhelming clinical trials, many people in the Long Covid community have lost faith in the program. While some advocates and researchers say the program could be turned around or adapted to a more efficient structure using the additional $515 million that the NIH provided in early 2024, others call for future funding to go elsewhere.” #pwME #LongCovid #MECFS #NIH
‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals
https://thesicktimes.org
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NIH Funding Opportunity: Neurological Effects of Infection Associated Chronic Illnesses Projects that investigate common neurological and/or mental health-related mechanisms across multiple infection-associated chronic illnesses of particular interest… clinical studies as well as preclinical studies utilizing cell culture/human tissue models in the context of a post-infectious etiology also encouraged. https://lnkd.in/ehgEs3X2 https://lnkd.in/evT3WkTs I had to post this because it is an immensely interesting topic. For some background, here is the link to the NAS workshop I was lucky enough to hear earlier this year: Toward a Common Research Agenda in Infection Associated Chronic Illnesses NAS Workshop (https://lnkd.in/ekb7T5xv). The illnesses discussed in this workshop, including COVID-19, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), persistent or posttreatment Lyme disease syndrome (PTLDS), and multiple sclerosis (MS), share overlapping mechanisms and symptoms and have been inadequately researched.
Part 1. Overview Information
grants.nih.gov
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It has been a privilege to support the American Society of Hematology's (ASH's) efforts to generate the 2024 #SickleCell Disease (SCD) Research Priorities paper. The Luminous team facilitated a series of meetings and workshops amongst a group of leading physicians and researchers leading to the identification of priorities for research focused on improving quality of life and health outcomes for patients with sickle cell disease. The priorities highlight seven key areas for the stakeholder community to focus on, providing a roadmap for advancing research, training #healthcare providers, and improving standards of care over the next five years. This update iterates on the 2014 priorities and will be revisited in 2029. ASH continues to lead the way for disorders affecting the blood. We are honored to play a role in driving innovative, equitable and meaningful approaches, with an organization that takes the time to understand and explore ways to support patients and communities. Learn more: https://lnkd.in/d5UMchWv #cocreation #clinicalresearch #healthoutcomes
ASH Announces Sickle Cell Disease Research Priorities to Accelerate Treatments and Comprehensive Care
hematology.org
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I am excited to share that my work with the Temple University PEDS lab has culminated in my first publication titled “Toxic metals and pediatric clinical immune dysfunction: A systematic review of the epidemiological evidence” in the Science of the Total Environment. Authors: Marina Oktapodas Feiler, PhD, Erin Kulick, Krystin Sinclair, Nitzana Spiegel, Sonia Habel, MPH, Olivia Given Castello Overview: Exposure to toxic metals is ubiquitous. The pediatric population has an increased risk of exposure and adverse outcomes. However, existing literature on this topic contains conflicting results. The purpose of this systematic review was to evaluate the associations between pediatric immune dysfunction and exposure to toxic metals (lead, cadmium, mercury, and arsenic). It is essential these relationships continue to be evaluated, as the risk of exposure to infectious disease is inevitable among this high risk population. Read the full paper here!: https://lnkd.in/e-pr2e3W
Toxic metals and pediatric clinical immune dysfunction: A systematic review of the epidemiological evidence
sciencedirect.com
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