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Cross-Platform Ecological Momentary Assessment App (JTrack-EMA+): Development and Usability Study.
J Med Internet Res
January 2025
Research Centre Jülich, Institute of Neuroscience and Medicine, Brain and Behaviour (INM-7), Jülich, Germany.
Background: Traditional in-clinic methods of collecting self-reported information are costly, time-consuming, subjective, and often limited in the quality and quantity of observation. However, smartphone-based ecological momentary assessments (EMAs) provide complementary information to in-clinic visits by collecting real-time, frequent, and longitudinal data that are ecologically valid. While these methods are promising, they are often prone to various technical obstacles.
View Article and Find Full Text PDFOperationalising a Haemophilia Gene Editing Lexicon for Practical Use.
Haemophilia
January 2025
Medicine and Pathology, Georgetown University, Washington, District of Columbia, USA.
Introduction: Gene editing therapies offer the possibility of substantial improvement in treatment and quality of life for people with haemophilia (PWH) in a landscape of dynamic therapeutic advancement. Developing a common and understandable language to discuss gene editing will be essential to ensure these treatments can be deployed in a safe and effective manner with fully informed and shared decision-making between healthcare professionals (HCPs) and PWH. A lexicon explaining and clarifying key concepts is one potential tool to address these aims.
View Article and Find Full Text PDFExperentia Et Progressus: An Experiential Needs Assessment of Military Health care Providers in Treating Pediatric Combat Trauma.
Mil Med
January 2025
Department of Pediatrics, Uniformed Services University, Bethesda, MD 20814, USA.
Introduction: Children are among the most vulnerable populations affected by armed conflicts, yet there is limited data on the preparedness of military medical personnel to care for pediatric combat trauma casualties in austere or large-scale combat operations. This study aimed to assess the confidence, training needs, and resource requirements of military medical providers who have managed pediatric patients during deployment.
Materials And Methods: This IRB-exempt, cross-sectional mixed-methods study used a survey created via a modified Delphi method with input from subject matter experts.
Coronavirus Disease 2019 (COVID-19) Real World Data Infrastructure: A Big-Data Resource for Study of the Impact of COVID-19 in Patient Populations With Immunocompromising Conditions.
Open Forum Infect Dis
January 2025
Northwell, Department of Pathology and Laboratory Medicine, New Hyde Park, New York, USA.
Background: We developed a United States-based real-world data resource to better understand the continued impact of the coronavirus disease 2019 (COVID-19) pandemic on immunocompromised patients, who are typically underrepresented in prospective studies and clinical trials.
Methods: The COVID-19 Real World Data infrastructure (CRWDi) was created by linking and harmonizing de-identified HealthVerity medical and pharmacy claims data from 1 December 2018 to 31 December 2023, with severe acute respiratory syndrome coronavirus 2 virologic and serologic laboratory data from major commercial laboratories and Northwell Health; COVID-19 vaccination data; and, for patients with cancer, 2010 to 2021 National Cancer Institute Surveillance, Epidemiology, and End Results registry data.
Results: The CRWDi contains 4 cohorts: patients with cancer; patients with rheumatic diseases receiving pharmacotherapy; noncancer solid organ and hematopoietic stem cell transplant recipients; and people from the general population including adults and pediatric patients.
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