Objective: Handheld computers (personal digital assistant, PDA) have the potential to reduce the logistic burden, cost, and error rate of paper-based health research data collection, but there is a lack of appropriate software. The present work describes the development and evaluation of PDACT, a Personal Data Collection Toolset (www.healthware.org/pdact/index.htm) for the Palm Pilot handheld computer for interviewer-administered and respondent-administered data collection.
Methods: We developed Personal Data Collection Toolkit (PDACT) software to enable questionnaires developed in QDS Design Studio, a Windows application, to be compiled and completed on Palm Pilot devices and evaluated in several representative field survey settings.
Results: The software has been used in seven separate studies and in over 90,000 interviews. Five interviewer-administered studies were completed in rural settings with poor communications infrastructure, following one day of interviewer training. Two respondent-administered questionnaire studies were completed by learners, in urban secondary schools, after 15min training. Questionnaires were available on each handheld in up to 11 languages, ranged from 20 to 580 questions, and took between 15 and 90min to complete. Up to 200 Palm Pilot devices were in use on a single day and, in about 50 device-years of use, very few technical problems were found. Compared with paper-based collection, data validation and cleaning times were reduced, and fewer errors were found. PDA data collection is easy to use and preferred by interviewers and respondents (both respondent-administered and interviewer-administered) over paper. Data are compiled and available within hours of collection facilitating data quality assurance. Although hardware increases the setup cost of the first study, the cumulative cost falls thereafter, and converges on the cumulative cost of paper-based studies (four, in the case of our interviewer-administered studies). Handheld data collection is an appropriate, affordable and convenient technology for health data collection, in diverse settings.
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http://dx.doi.org/10.1016/j.ijmedinf.2008.10.006 | DOI Listing |
Alzheimers Dement
December 2024
The George Institute for Global Health, University of New South Wales, Imperial College London, Sydney, NSW, Australia.
Background: Recent growth in the functionality and use of technology has prompted an increased interest in the potential for remote or decentralised clinical trials in dementia. There are many potential benefits associated with decentralised medication trials, but the field is currently lacking specific recommendations for their delivery in the dementia field.
Method: A modified Delphi method engaged a panel with substantial expertise in dementia trial design and delivery and backgrounds that included neurology, psychiatry, pharmacology and psychology, to develop recommendations for the conduct of decentralised medication trials in dementia prevention.
Alzheimers Dement
December 2024
University of California San Francisco (UCSF), San Francisco, CA, USA; Northern California Institute for Research & Education (NCIRE), San Francisco, CA, USA; San Francisco Veterans Administration Medical Center (SFVAMC), San Francisco, CA, CA, USA.
The Alzheimer's Disease Neuroimaging Initiative (ADNI) has made many important contributions to the development of Alzheimer's Disease (AD) disease modifying treatments and diagnostic biomarkers. Since its funding in 2004 by the National Institutes of Aging, the goal of ADNI has been the validation of biomarkers for AD treatment trials. ADNI has enrolled over 2,400 participants in the USA and Canada for longitudinal clinical, cognitive, and biomarker studies.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Hospital de la Santa Creu i Sant Pau - Biomedical Research Institute Sant Pau - Autonomous University of Barcelona, Barcelona, Catalonia, Spain.
Background: Alzheimer's and related disorders (ADRD) represent a range of neurodegenerative conditions characterized by abnormal protein deposits in the brain. Despite advances, there is a need for enhanced diagnostic and treatment approaches that acknowledge the diversity of ADRD. This project introduces the Alzheimer's and Related Disorders Multicenter Archive (ARMA), a collaborative platform with an advanced Electronic Data Capture (EDC) system linked to Electronic Medical Records (EMR) designed to refine ADRD diagnosis and natural history understanding, thus informing precision medicine.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Tokyo Metropolitan Institute for Geriatrics and Gerontology, Tokyo, Japan.
In Japan, the regulatory authority approved the drug in September 2023, and on December 20, it became available for prescription country-wide under the health insurance system. However, there are strict patient, physician, and facility requirements for the prescription of Lecanemab, and various problems are anticipated in its future implementation and widespread use in society. Lecanemab is the first anti-Aβ antibody in Japan, and even dementia specialists do not have sufficient knowledge and experience in its introduction, evaluation of efficacy, and evaluation and handling of side effects.
View Article and Find Full Text PDFReal-world data on the uptake, effectiveness and safety of new diagnostics and disease-modifying (DMT) treatments for Alzheimer's Disease (AD) are imperative. This can be achieved through patient registries. A major challenge is how to embed registry data capture into routine clinical practice.
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