Virtual Cohorts and Synthetic Data in Dementia: An Illustration of Their Potential to Advance Research.
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ABSTRACT:
SUBMITTER: Muniz-Terrera G
PROVIDER: S-EPMC8165312 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundAs Vietnam and other low- and middle-income countries (LMIC) experience a rapid increase in the number of people living with dementia, an acute need exists to strengthen research capacity to inform policy, improve care and support, and develop national dementia plans. We describe the development and early outcomes of an National Institutes of Health (NIH)/National Institute on Aging (NIA)-funded national dementia research capacity building program in Vietnam.MethodsThe research capacity building program commenced in 2019 and has three components: (1) Vietnam Alzheimer's and other dementias research Network (VAN), (2) a mentored pilot grant program, and (3) research training, networking, and dissemination activities. The pilot grant program funds Vietnamese researchers for one to two years to conduct research focusing on Alzheimer's Disease and Alzheimer's Disease Related Dementias (AD/ADRD). Grants are reviewed and scored using NIH criteria, and priority is given to pilot grants with policy relevance and potential for future funding. An international pool of high-income country (e.g., United States, Australia, and United Kingdom) mentors has been engaged and mentors paired with each funded project. Training and networking activities include workshops on AD/ADRD research topics and regular meetings in conjunction with Vietnam's annual national dementia/geriatric conferences. Dissemination is facilitated through targeted outreach and the creation of a national network of institutions.ResultsOver four years (2019-2023), we received 62 applications, reviewed 58 applications, and funded 21 projects (4-5 per year). Funded investigators were from diverse disciplines and institutions across Vietnam with projects on a range of topics, including biomarkers, prevention, diagnosis, neuropsychological assessment, family caregiver support, dementia education, and clinical trials. A network of 12 leading academic and research institutions nationwide has been created to facilitate dissemination. Six research training workshops have been organized and included presentations from international speakers. Grantees have published or presented their studies at both national and international levels. The mentoring program has helped grantees to build their research skills and expand their research network.ConclusionThis research capacity building program is the first of its kind in Vietnam and may serve as a useful model for other LMIC.
| S-EPMC10832103 | biostudies-literature
Project description:This paper demonstrates how Geographic Information Systems (GIS) can be utilized to study the effects of spatial phenomena. Since experimental designs such as Randomized Controlled Trials are generally not feasible for spatial problems, researchers need to rely on quasi-experimental approaches using observational data. We provide a regression-based framework of the key procedures for GIS-based empirical research design using georeferenced point data for both spatial events of interest and subjects exposed to the events. We illustrate its utility and implementation through a case study on the impacts of the Cambodian genocide under the Pol Pot regime on post-conflict education.
| S-EPMC6398843 | biostudies-literature
Project description:BackgroundStrategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement.ObjectiveWe describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings.SettingThe ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states.ResultsPatients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts.DiscussionThe ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.
| S-EPMC6136943 | biostudies-literature
Project description:BackgroundTo advance research on malaria, the outputs from existing studies and the data that fed into them need to be made freely available. This will ensure new studies can build on the work that has gone before. These data and results also need to be made available to groups who are developing public health policies based on up-to-date evidence. The Malaria Atlas Project (MAP) has collated and geopositioned over 50,000 parasite prevalence and vector occurrence survey records contributed by over 3,000 sources including research groups, government agencies and non-governmental organizations worldwide. This paper describes the results of a project set up to release data gathered, used and generated by MAP.MethodsRequests for permission to release data online were sent to 236 groups who had contributed unpublished prevalence (parasite rate) surveys. An online explorer tool was developed so that users can visualize the spatial distribution of the vector and parasite survey data before downloading it. In addition, a consultation group was convened to provide advice on the mode and format of release for data generated by MAP's modelling work. New software was developed to produce a suite of publication-quality map images for download from the internet for use in external publications.ConclusionMore than 40,000 survey records can now be visualized on a set of dynamic maps and downloaded from the MAP website on a free and unrestricted basis. As new data are added and new permissions to release existing data come in, the volume of data available for download will increase. The modelled data output from MAP's own analyses are also available online in a range of formats, including image files and GIS surface data, for use in advocacy, education, further research and to help parameterize or validate other mathematical models.
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Project description:The "big data" paradigm has gained a lot of attention recently, in particular in those areas of biomedicine where we face clear unmet medical needs. Coined as a new paradigm for complex problem solving, big data approaches seem to open promising perspectives in particular for a better understanding of complex diseases such as Alzheimer's disease and other dementias. In this commentary, we will provide a brief overview on big data principles and the potential they may bring to dementia research, and - most importantly - we will do a reality check in order to provide an answer to the question of whether dementia research is ready for big data approaches.
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Project description:We developed a three-dimensional (3D) synthetic animated mouse based on computed tomography scans that is actuated using animation and semirandom, joint-constrained movements to generate synthetic behavioral data with ground-truth label locations. Image-domain translation produced realistic synthetic videos used to train two-dimensional (2D) and 3D pose estimation models with accuracy similar to typical manual training datasets. The outputs from the 3D model-based pose estimation yielded better definition of behavioral clusters than 2D videos and may facilitate automated ethological classification.
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Project description:Many organizations collect and make available perinatal data for research and quality improvement initiatives. Analysis of existing data and use of retrospective study design has many advantages for perinatal researchers. These advantages include large samples, inclusion of women from diverse groups, data reflective of actual clinical processes and outcomes, and decreased risk of direct maternal and fetal harm. We review 11 publicly available datasets relevant to perinatal research and quality improvement, detail the availability of interactive websites, and discuss strategies to locate additional datasets. While analysis of existing data has limitations, it may provide statistical power to study rare perinatal outcomes, support research applicable to diverse populations, and facilitate timely and ethical well-woman research immediately relevant to clinical care.
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Project description:Two-dimensional illustration is used extensively to study and disseminate the results of structural molecular biology. Molecular graphics methods have been and continue to be developed to address the growing needs of the structural biology community, and there are currently many effective, turn-key methods for displaying and exploring molecular structure. Building on decades of experience in design, best-practice resources are available to guide creation of illustrations that are effective for research and education communities.
| S-EPMC6186494 | biostudies-literature
Project description:Research studies exploring the determinants of disease require sufficient statistical power to detect meaningful effects. Sample size is often increased through centralized pooling of disparately located datasets, though ethical, privacy and data ownership issues can often hamper this process. Methods that facilitate the sharing of research data that are sympathetic with these issues and which allow flexible and detailed statistical analyses are therefore in critical need. We have created a software platform for the Virtual Pooling and Analysis of Research data (ViPAR), which employs free and open source methods to provide researchers with a web-based platform to analyse datasets housed in disparate locations.Database federation permits controlled access to remotely located datasets from a central location. The Secure Shell protocol allows data to be securely exchanged between devices over an insecure network. ViPAR combines these free technologies into a solution that facilitates 'virtual pooling' where data can be temporarily pooled into computer memory and made available for analysis without the need for permanent central storage.Within the ViPAR infrastructure, remote sites manage their own harmonized research dataset in a database hosted at their site, while a central server hosts the data federation component and a secure analysis portal. When an analysis is initiated, requested data are retrieved from each remote site and virtually pooled at the central site. The data are then analysed by statistical software and, on completion, results of the analysis are returned to the user and the virtually pooled data are removed from memory.ViPAR is a secure, flexible and powerful analysis platform built on open source technology that is currently in use by large international consortia, and is made publicly available at [http://bioinformatics.childhealthresearch.org.au/software/vipar/].
| S-EPMC4864874 | biostudies-other
Project description:This SuperSeries is composed of the SubSeries listed below.
2021-04-23 | GSE173141 | GEO