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Authors' Reply: Commentary on "Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line".
J Med Internet Res
January 2025
Crisis Text Line, New York, NY, United States.
We appreciate Reierson's thoughtful commentary on our 2019 paper, which described our experiences, ethical process, judgment calls, and lessons from a 2016-2017 data-sharing pilot between Crisis Text Line and academic researchers. The commentary raises important questions about the ethical conduct of health research in the digital age, particularly regarding informed consent, potential conflicts of interest, and the protection of vulnerable populations. Our article focused specifically on the noncommercial use of Crisis Text Line data for research purposes, so we restrict our reply to points relevant to such usage.
View Article and Find Full Text PDFPatient Voices: Multimethod Study on the Feasibility of Implementing Electronic Patient-Reported Outcome Measures in a Comprehensive Cancer Center.
JMIR Cancer
January 2025
Scientific Directorate, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milano, Italy.
Background: "Patient Voices" is a software developed to promote the systematic collection of electronic patient-reported outcome measures (ePROMs) in routine oncology clinical practice.
Objective: This study aimed to assess compliance with and feasibility of the Patient Voices ePROM system and analyze patient-related barriers in an Italian comprehensive cancer center.
Methods: Consecutive patients with cancer attending 3 outpatient clinics and 3 inpatient wards were screened for eligibility (adults, native speakers, and being able to fill in the ePROMs) and enrolled in a quantitative and qualitative multimethod study.
Barriers and Facilitators in Implementing a Telemonitoring Application for Patients With Chronic Kidney Disease and Health Professionals: Ancillary Implementation Study of the NeLLY (New Health e-Link in the Lyon Region) Stepped-Wedge Randomized Controlled Trial.
JMIR Mhealth Uhealth
January 2025
Calydial, Vienne, France.
Background: The use of telemonitoring to manage renal function in patients with chronic kidney disease (CKD) is recommended by health authorities. However, despite these recommendations, the adoption of telemonitoring by both health care professionals and patients faces numerous challenges.
Objective: This study aims to identify barriers and facilitators in the implementation of a telemonitoring program for patients with CKD, as perceived by health care professionals and patients, and to explore factors associated with the adoption of the program.
REVEAL-CP: Selective Screening of Pediatric Patients for Aromatic L-Amino Acid Decarboxylase Deficiency with a Guthrie Card and Structural Modeling of One Index Case.
Genet Test Mol Biomarkers
January 2025
PTC Therapeutics Germany GmbH, Frankfurt, Germany.
The main objective of this prospective, multicenter study (REVEAL-CP) was to test children with cerebral palsy-like signs and symptoms for raised 3--methyldopa (3-OMD) blood levels, a biomarker for aromatic L-amino acid decarboxylase deficiency (AADCd). A secondary objective was to characterize the molecular basis for the defective aromatic L-amino acid decarboxylase (AADC) gene product. Patients were identified in pediatric secondary and tertiary care hospitals through database searches and personal communication.
View Article and Find Full Text PDFBackground: Medication-related adverse events are common in pregnant women, and most are due to misunderstanding medication information. The identification of appropriate medication information sources requires adequate medical information literacy (MIL). It is important for pregnant women to comprehensively evaluate the risk of medication treatment, self-monitor their medication response, and actively participate in decision-making to reduce medication-related adverse events.
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