Amerah Bin Zuair’s Post

Patients as a source of #data is a needed and effective way to improve data completeness, to reduce gaps, to counter bias, anc improve diversity, here for #raredisease. “With goals of increasing access while decreasing costs, the PFF changed the Registry protocol to collect data directly from patients, family members, caregivers, and recipients of a lung transplant without the need to be seen at or have their data entered by a study center. This version has been called the Community Registry and relies on a broader scope of information that comes directly from the patient and affected individuals, rather than through a study center. This allows the potential to capture a larger and more diverse segment of the patient population, which can provide valuable insights to researchers. Participation in the Community Registry is voluntary and can be completed online at the patient’s leisure. Like the PFF Community Registry, there are similar initiatives for rare diseases such as congenital muscle disease, cystic fibrosis, and ALS.” https://lnkd.in/eFgtz4TY

I'm pleased to share a new article on LinkedIn: "Obtaining Patient Phenotypes in SARS-CoV-2 Pneumonia and Their Association with Clinical Severity and Mortality" by Fernando García-García et al. 📊🧬 This study leverages machine learning clustering to identify distinct clinical phenotypes among hospitalized COVID-19 patients. By understanding these phenotypes, we can better predict disease progression, severity, and mortality, ultimately enhancing patient care and treatment strategies. #COVID19 #MachineLearning #HealthcareInnovation

A recent study shows that remote monitoring of lung function using home spirometry and pulse oximetry is not only feasible but also well-received by patients with interstitial lung disease (ILD). With an impressive 91.2% median adherence rate, this approach could revolutionize how we manage ILD care, making it more accessible and efficient. Participants who responded to an experience questionnaire (n = 33) found remote measurements easy to perform and 75% wished to continue monitoring at the conclusion of the study. #remotemonitoring #RPM

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

Article alert from the Journal of Comparative Effectiveness Research: Healthcare resource utilization and costs among patients with alpha-1 antitrypsin deficiency with liver and/or lung disease: a longitudinal retrospective study in the USA Using the IQVIA PharMetrics Plus and AEMR databases, this study evaluates all-cause and liver-associated healthcare resource utilization and costs among patients with alpha-1 antitrypsin deficiency with #liverdisease and/or #lungdisease. Authors: May Hagiwara, PhD, Suna Park, Ed Marins and Kaili Ren (Takeda), Victoria Divino and Mark DeLegge, MD, FACG, CNSP, AGAF, FASGE (IQVIA), and Charlie Strange (Medical University of South Carolina) #heor #healtheconomics #claimsdata

**Inflammatory Markers, Frailty, and Mortality in Older COVID-19 Patients** 🏥🔬 A recent study highlights the critical link between inflammatory markers and frailty in older COVID-19 patients, revealing their significant impact on in-hospital mortality. Elevated inflammatory markers were associated with increased frailty and a higher risk of death, underscoring the need for targeted interventions to manage inflammation and improve outcomes in this vulnerable population. #COVID19 #GeriatricMedicine #Inflammation

PALO ALTO, Calif., April 30, 2024 /PRNewswire/ -- Verantos, the global leader in high-validity real-world evidence at scale, today announced the launch of its Inflammatory Bowel Disease Pragmatic Registry, which provides rich and reliable data on ulcerative colitis and Crohn's disease patients, including specific subgroups to life sciences organizations. A pragmatic registry is a condition-specific, high-quality data set generated using artificial intelligence on routinely collected real-world data. By combining unstructured and structured data from electronic health records with linkage to claims and mortality data, Inflammatory Bowel Disease Pragmatic Registry offers an unparalleled view into disease severity, treatments, symptom control, resource utilization, and clinical outcomes variables.

Title: Understanding White Blood Cell Count: Key Insights for Health Professionals As healthcare professionals, we know that white blood cell (WBC) count is a crucial marker in assessing a patient's health. But what exactly does it indicate, and why is it significant? 1. The Role of White Blood Cells: White blood cells are the body's defense system, crucial for fighting off infections and maintaining overall health. They include various types such as neutrophils, lymphocytes, monocytes, eosinophils, and basophils, each with specific functions in the immune response. 2. Interpreting WBC Count: A normal WBC count typically ranges from 4,500 to 10,000 cells per microliter of blood. Deviations from this range can signify underlying health issues. For instance, a high WBC count (leukocytosis) may indicate infection, inflammation, or even leukemia, while a low count (leukopenia) could suggest bone marrow disorders, autoimmune diseases, or viral infections. 3. Clinical Implications: Monitoring WBC count is essential in diagnosing and managing various conditions. For example, in cancer treatment, tracking WBC levels helps assess the impact of chemotherapy on the patient's immune system and guides supportive care strategies to prevent infections. 4. Diagnostic Tools: Advancements in technology have enabled more accurate and efficient measurement of WBC count. Automated blood analyzers provide rapid results, aiding healthcare providers in making timely decisions for patient care. 5. Beyond Numbers: While WBC count provides valuable information, it's essential to consider other factors such as differential counts (percentage of each type of white blood cell) and the patient's clinical presentation for a comprehensive assessment. Understanding white blood cell count empowers healthcare professionals to better evaluate and manage their patients' health. By staying informed about the latest developments in WBC monitoring, we can enhance patient care and outcomes. #Healthcare #WhiteBloodCells #MedicalScience #PatientCare #HealthcareProfessionals

In Western countries, rates of #OesophagealCancer and #GastricCancer have surged over the past five decades. Early detection is essential in empowering patients to take proactive steps to help prevent the onset of these diseases. Discover how a new tool, driven by #ArtificialIntelligence and integrated into electronic health records, could close the awareness gap between providers and at-risk #patients. Learn more in this Medical Xpress article: https://ow.ly/4EZR50R480h #CancerPrevention #EarlyDiagnosis #MedicalResearch

In a new clinical practice guideline, the ACG has provided evidence-based recommendations for the diagnosis and management of the most common focal liver lesions among individuals without known liver disease. https://lnkd.in/eQAjdSY8