John Cush’s Post

Standardizing Still’s Disease Research: Global Data Harmonization Needed A recent study presented at #ACR24 convergence highlights significant gaps and inconsistencies in the research of systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still’s disease (AOSD). Analyzing 195 studies with over 18,000 patients, they found considerable variation in clinical and outcome measures between pediatric and adult cohorts.

You can find two important papers pertaining to IgG4-RD that were recently in The Lancet Rheumatology on our website here: ▪️ https://shorturl.at/bjEVY ▪️ https://shorturl.at/buDY7 These papers, along with an accompanying Introduction/Editorial entitled "Celebrating Progress in the Vasculitides, Old and New" (https://shorturl.at/hsDGH) encapsulate current thinking about this disease. We encourage you to check them out and learn more! #igg4rd #igg4relateddisease #rarediseaseawareness

Policy | In the First Catalogue of Rare Diseases, which was jointly developed by the National Health Commission of the PRC and five other departments in 2018, there is a rare disease called IgG4-Related Disease (IgG4-RD). As of now, clinical diagnosis of IgG4-RD relies on the following 3 aspects: https://lnkd.in/g4kD4G_v #IVD #diagnostics #raredisease #bloodtest #tumor #immunedisease #organ #tissue

How can we improve outcomes for patients with primary biliary cholangitis (PBC) through early intervention and comprehensive care? Join Dr. Brian McDonough and Dr. Robert Gish as they delve into essential strategies for addressing both disease progression and symptom management in PBC patients. They explore the role of early diagnosis, staging, and tailored therapeutic approaches that address not only biochemical markers but also quality-of-life impacts like fatigue and pruritus. Empower your practice with insights that can help halt progression and improve lives: https://ow.ly/yPR450UlPNN #PrimaryBiliaryCholangitis #Gastroenterology #Gastroenterologists #LiverHealth

Leaving no patient behind! As a member of International Rare Diseases Research Consortium (IRDiRC), I'm excited to share the last publication, "Leaving no patient behind! Expert recommendation in the use of innovative technologies for diagnosing rare diseases", is now live on Orphanet Journal of Rare Diseases with open access (https://lnkd.in/e9P4AzZf). This topic is close to my heart, and I believe it's crucial for improving patient outcomes. But frankly speaking, what resonates most with me is how state-of-the-art technologies improve care pathways 🔍 What are Care Pathways? CPWs are structured approaches to harmonize and continually improve care processes within patient-centered care. They ensure "the right person, in the right place, doing the right thing, at the right time, with the right outcome" - all while prioritizing the patient experience. 🌟 Key Benefits of CPWs: 1. Tailored Care: Can be developed for single rare diseases or groups of related disorders 2. Comprehensive Approach: Includes diagnostics, treatments, long-term care, rehabilitation, and more 3. Localized(!) Solutions: Considers available resources, healthcare structures, and care systems 4. Personalized Application: Adapts to each patient's disease presentation, severity, and circumstances 💡 Why CPWs Matter: While clinical guidelines offer generic standards, CPWs bring these recommendations to life in specific healthcare contexts. They bridge the gap between theory and practice, ensuring that patients receive the most appropriate care for their unique situation. When we help our users, we see that no two situations are the same, even with the same diagnosis. This is why understanding care pathways is key to truly personalized medicine and services. #RareDiseases #CarePathways #PatientCenteredCare #HealthcareInnovation #InnovativeDiagnosis #TechForGood #OpenAccess #IRDiRC

🌟 Improving Diagnosis and Treatment of Sjögren Disease to Boost Patient Care 🌟 Sjögren disease (SjD) is a complex autoimmune disorder that affects individuals of all ages, often leading to delayed diagnoses and inadequate treatment due to its varied symptoms. 🔍 Key Challenges: - Overlapping symptoms with other autoimmune conditions - Limited effective therapies available - Need for sensitive, age-appropriate outcome measures - Importance of predictive biomarkers for personalized treatment To enhance patient care, we must refine diagnostic criteria and develop targeted therapies. By implementing robust outcome measures and biomarker strategies in clinical trials, we can ensure that new treatments are effective and tailored to individual needs. Together, let's elevate the quality of life for those affected by Sjögren disease! 👉 Click the link for more insights! #AutoimmuneDisorders #Biomarkers #HealthcareInnovation #PatientCare #Publications #RegulatoryAgencies #SjögrenDisease #MarketAccess #MarketAccessToday

Providing novel insights on its development and management, a recent study from the Technical University of Munich clarifies how mitochondrial malfunction could contribute to Crohn's disease. Here, we talk about this study and our Crohn's disease Diagnosis. #marbella

I'm thrilled to share our latest article on diagnosing Sjögren's disease using Raman Spectroscopy. Sjögren's disease is often underdiagnosed autoimmune disorder affecting exocrine glands and causing dry eyes and mouth, among other morbidities. 🩺 Challenges in Current Diagnosis: Sjögren's disease is notoriously difficult to diagnose due to: Non-specific symptoms Limited awareness among healthcare professionals Complex diagnostic criteria High cost, complexity, and invasiveness of current diagnostic methods 🔬 Our Innovative Solution: We've harnessed the power of Raman hyperspectroscopy combined with machine learning to develop a novel, non-invasive screening test. Our method effectively distinguishes Sjögren's disease patients from healthy controls and those with radiation-induced dry mouth. 🌟 Key Benefits: Non-invasive and efficient Rapid and inexpensive High potential for clinical application Check out the link for the full article: https://lnkd.in/euPDnsWm. #SjogrensDisease #AutoimmuneDisorders #InnovationInHealthcare #RamanHyperspectroscopy #MachineLearning #Diagnostics

The Cerebellum journal recently published our article on the development of a new measure that better captures disease progression in patients with spinocerebellar ataxia. The partial least squares methodology allows for objective selection and weighting of candidate scale items based on their sensitivity to clinical decline. The resulting composite scale is therefore optimized to detect disease progression in the patient population of interest. #BroadstreetHEOR #SCACOMS

Study reveals long diagnostic delays for rare diseases in Europe