Explanipedia

How do we put meaning into meaningful benefit? Perspectives from the lived experience Open

Russ Paulsen, Carla DeMuro, Terry Frangiosa, Margaret Mordin, Gabrielle J. Dardis , et al. · 2025

Meaningful benefit is a much‐debated concept in Alzheimer's disease (AD). Research to date has primarily focused on change thresholds that are anchored in clinicians’ or care partners’ impressions; however, these thresholds are not inheren…

P158: Qualitative interviews to support the development of a patient-reported outcome (PRO) measure for glycogen storage disease type Ia* Open

David Rodriguez‐Buritica, Jennifer Dine, Terrance Brown, Carla DeMuro, Emily Bratlee‐Whitaker , et al. · 2025

Measuring What Matters Most to People Living with Alzheimer’s Disease and Care Partners: What Matters Most Quantitative Research Development Open

Carla DeMuro, Emily Bratlee‐Whitaker, Ann Hartry, Elizabeth S. Mearns, Jim Taylor , et al. · 2024

Background Previous What Matters Most (WMM) research identified and verified patient‐important concepts among a diverse population of people living with Alzheimer’s disease (PLWAD) and their care partners across all stages of Alzheimer’s d…

The Limitations of EQ-5D as a Clinical Outcome Assessment Tool Open

Ari Gnanasakthy, Carla DeMuro · 2024

Caregiver experiences and observations of intrathecal idursulfase-IT treatment in a phase 2/3 trial in pediatric patients with neuronopathic mucopolysaccharidosis II Open

Karen S. Yee, Sandy Lewis, Emily Evans, Carla DeMuro, David Alexanderian · 2024

Psychometric evaluation of the respiratory syncytial virus infection, intensity and impact questionnaire (RSV-iiiQ) in adults Open

Valerie Williams, Carla DeMuro, Lyn Finelli, Shanshan Qin, Todd L. Saretsky , et al. · 2024

Content validity of the Leicester Cough Questionnaire in adults with refractory or unexplained chronic cough: a qualitative interview study Open

Allison Martin Nguyen, Carmen La Rosa, Alexandra G. Cornell, Mandel Sher, Jonathan A. Bernstein , et al. · 2024

Background: Chronic cough, a cough lasting >8 weeks, includes refractory chronic cough (RCC) and unexplained chronic cough (UCC). Patient-reported outcome (PRO) measures are needed to better understand chronic cough impacts that matter mos…

Patient-reported experiences with refractory or unexplained chronic cough: a qualitative analysis Open

Vishal Bali, Jonathan Schelfhout, Mandel Sher, Anju T. Peters, Gayatri Patel , et al. · 2024

Background: Chronic cough, defined as a cough lasting 8 or more weeks, affects up to 10% of adults. Refractory chronic cough (RCC) is a cough that is uncontrolled despite comprehensive investigation and treatment of comorbid conditions whi…

Measuring “What Matters Most™” to individuals living with Alzheimer’s disease and care partners: A conceptual model of Alzheimer’s Disease Open

Carla DeMuro, Christina Slota, Emily Bratlee‐Whitaker, Teresa Edwards, William L. Herring , et al. · 2023

Background The Alzheimer’s Disease Patient and Caregiver Engagement™ Initiative‘s What Matters Most™ (WMM) Research Program includes seminal studies to identify and measure treatment‐related needs, preferences, and priorities of people liv…

Psychometric evaluation of an electronic Asthma Symptom Diary for young children Open

Valerie Williams, Carla DeMuro, Marci Clark, N. Williams, Diana Goss , et al. · 2023

Evaluating Elements of the Care Partner Experience in Individuals Who Care for People with Alzheimer's Disease Across the Severity Spectrum Open

Leigh F. Callahan, Brian Samsell, Dana DiBenedetti, Terry Frangiosa, Christina Slota , et al. · 2023

Qualitative assessment of the patient experience of primary hyperoxaluria type 1: an observational study Open

David Danese, Diana Goss, Carla DeMuro, Catherine Gupta · 2023

Background Without effective intervention, primary hyperoxaluria type 1 (PH1) causes oxalate-induced kidney damage, leading to end-stage kidney disease and serious complications throughout the body. Although PH1 carries a heavy burden that…

Editorial Board Open

Michael Drummond, Daniel Mullins, Jagpreet Chhatwal, Oriana Ciani, Dalia Dawoud , et al. · 2023

Understanding the patient experience and treatment benefits in patients with non–small‐cell lung cancer with brain metastasis Open

David Cella, Patrick Y. Wen, Claire Ervin, Susan Vallow, I. Gilloteau , et al. · 2023

Background Despite the high prevalence of brain metastases (BM) secondary to non–small‐cell lung cancer (NSCLC) (NSCLC/BM), patients' experiences (symptoms and impacts) are not fully understood. This study sought to understand the patient …

Editorial Board Open

Michael Drummond, Daniel Mullins, Jagpreet Chhatwal, Oriana Ciani, Dalia Dawoud , et al. · 2023

Psychometric evaluation of the Symptoms of Infection with Coronavirus-19 (SIC): results from a cross-sectional study and a phase 3 clinical trial Open

Eric K. H. Chan, Valerie Williams, Carla DeMuro, Sheri Fehnel, Ashley F. Slagle , et al. · 2023

Editorial Board Open

Michael Drummond, Daniel Mullins, Jagpreet Chhatwal, Oriana Ciani, Dalia Dawoud , et al. · 2023

Editorial Board Open

Michael Drummond, Daniel Mullins, Jagpreet Chhatwal, Oriana Ciani, Dalia Dawoud , et al. · 2023

Editorial Board Open

Michael Drummond, Daniel Mullins, Jagpreet Chhatwal, Oriana Ciani, Dalia Dawoud , et al. · 2023

Assessing the patient experience of respiratory syncytial virus infection: development of a patient-reported outcome measure Open

Carla DeMuro, Lyn Finelli, Sandy Lewis, Valerie Williams, Emily T. Martin , et al. · 2023

Technical Review of Clinical Outcomes Assessments Across the Continuum of Alzheimer's Disease Open

Dana DiBenedetti, Heather L. Menne, Russ Paulsen, Holly B. Krasa, George Vradenburg , et al. · 2023

While many frequently used COAs in AD capture some concepts identified as important to AD populations and their care partners, overlap between any single measure and the concepts that matter to people affected by AD is limited. The highest…

Assessing What Matters to People Affected by Alzheimer’s Disease: A Quantitative Analysis Open

Brett Hauber, Russ Paulsen, Holly B. Krasa, George Vradenburg, Meryl Comer , et al. · 2023

Concepts of importance to individuals affected by AD go beyond the common understanding of "cognition" or "function" alone, reflecting a desire to maintain independence, overall physical and mental health, emotional well-being, and safety.…

Editorial Board Open

Michael Drummond, Daniel Mullins, Jagpreet Chhatwal, Oriana Ciani, Dalia Dawoud , et al. · 2023

Development of patient- and observer-reported outcome measures to assess COVID-19 signs and symptoms in children and adolescents Open

Carla DeMuro, Margaret Mayorga, Javier Ruiz‐Guiñazú, Géralyn C. Trudel, Sheri Fehnel , et al. · 2023

Editorial Board Open

Michael Drummond, Daniel Mullins, Jagpreet Chhatwal, Oriana Ciani, Dalia Dawoud , et al. · 2023

1061. Evaluation of Measures for the Assessment of Covid-19 Signs and Symptoms in Children and Adolescents Open

Carla DeMuro, Margaret Mayorga, Javier Ruiz‐Guiñazú, Géralyn C. Trudel, Sheri Fehnel , et al. · 2022

Background The Symptoms of Infection with Coronavirus-19 (SIC) is a 30-item patient-reported outcome (PRO) measure developed to assess the presence and severity of COVID-19 signs and symptoms in adults. To further facilitate the evaluation…

Editorial Board Open

Michael Drummond, Daniel Mullins, Sarah Acaster, Msc Acaster, Jagpreet Chhatwal , et al. · 2022

Editorial Board Open

Michael Drummond, Daniel Mullins, Sarah Acaster, Msc Acaster, Jagpreet Chhatwal , et al. · 2022

Editorial Board Open

Michael Drummond, Daniel Mullins, Sarah Acaster, Msc Acaster, Jagpreet Chhatwal , et al. · 2022

Development of a novel patient-reported outcome measure to assess signs and symptoms of COVID-19 Open

Carla DeMuro, Sheri Fehnel, Jeffrey J. Stoddard, Jerald Sadoff, Sandy Lewis , et al. · 2022

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