scholarly journals Towards empathetic autism research: Developing an autism-specific Research Passport

2020 ◽  
Author(s):  
Maria Ashworth ◽  
Laura Crane ◽  
Robyn Steward ◽  
Melissa Bovis ◽  
Liz Pellicano
Keyword(s):  
Large Scale ◽  
Preliminary Evaluation ◽  
Research Projects ◽  
Community Members ◽  
Ongoing Research ◽  
Negative Experiences ◽  
Autism Research ◽  
Iterative Design ◽  
Large Scale Testing ◽  
Autistic Adults

Despite a dramatic increase in the amount of autism research taking place, autistic adults often report negative experiences of participating in such research. In other areas where community members report dissatisfaction (e.g., healthcare, criminal justice), ‘passports’ or ‘toolkits’ have been developed. In the current project, we created a Research Passport that could be used by autistic adults and autism researchers when engaging in research. Using a participatory framework, we designed and developed a Research Passport via an iterative design process. First, focus groups with autistic adults (n=9) and autism researchers (n=6) were used to elicit initial ideas for a Research Passport. Findings showed that the Research Passport (1) was perceived to be a useful idea, but not a panacea for all issues in autism research, (2) needed to be universal and flexible, and (3) could have a broad remit (e.g., to record scores on commonly-used standardized tasks that could, with permission, be shared with different researchers). Next, a preliminary evaluation of a prototype Research Passport was conducted via usability testing in three ongoing research projects. Nine autistic participants provided feedback (via a survey), as did three researchers (via interviews). We identified three themes from these data, highlighting how the Research Passport: (1) promoted positive participant-researcher relationships, (2) provided a structure and framework to support existing practices, and (3) needed to be adapted slightly to facilitate usability and manage expectations. Overall, the Research Passport was perceived to be useful in promoting empathetic autism research. Further design and large-scale testing are warranted.

scholarly journals Short report: Patterns of US federal autism research funding during 2017–2019

Autism ◽  
2021 ◽  
pp. 136236132110034
Author(s):  
Lauren Harris ◽  
Daniel Gilmore ◽  
Anne Longo ◽  
Brittany N Hand
Keyword(s):  
United States ◽  
Research Funding ◽  
The United States ◽  
Biological Research ◽  
Evidence Based ◽  
Short Report ◽  
Research Projects ◽  
Community Members ◽  
Autism Research ◽  
Research Areas

In 2017, the Interagency Autism Coordinating Committee, a federal advisory panel consisting of autism researchers and community members, recommended that funders of autism research prioritize research projects on: (1) treatments/interventions, (2) evidence-based services, and (3) lifespan issues. We sought to describe research funding since this recommendation was made. We searched the databases of the three largest federal funders of autism research in the United States (National Institutes of Health, Department of Education, and Centers for Disease Control and Prevention) for grants awarded during 2017–2019. We categorized grants as follows: autism screening and diagnosis, biology, risk factors, treatments and interventions, services, lifespan issues, or infrastructure and surveillance. We found that funding patterns remained largely consistent during 2017–2019. Biological research received a relative majority of funding (32.59%), followed by treatments and interventions (22.87%). While given higher funding priority by the Interagency Autism Coordinating Committee’s recent budget recommendation, fewer funds were awarded to research areas like services (5.02%) and lifespan issues (2.51%), indicating a misalignment between funding patterns and the Interagency Autism Coordinating Committee budget recommendation. These findings emphasize the need for autism research funding to align with the Interagency Autism Coordinating Committee budget recommendations to best meet the needs of the autism community, particularly autistic younger, middle-aged, and older adults. Lay abstract In 2017, an advisory board consisting of autism researchers and community members recommended that funders of autism research prioritize research projects on: (1) treatments/interventions, (2) evidence-based services, and (3) lifespan issues. To describe funding in these areas since this recommendation was made, we searched the databases of the three largest federal funders of autism research in the United States. We found that the largest portion of federal funding during 2017–2019 was awarded to research on the biology of autism (32.59%) and treatments and interventions for autism (22.87%). Less funds were awarded to research areas that are high funding priorities by the Interagency Autism Coordinating Committee budget recommendation including services (5.02%) and lifespan issues (2.51%). Our findings emphasize that autism research funding is not consistent with the Interagency Autism Coordinating Committee budget recommendation to increase funding particularly to services and lifespan issues. We recommend that funding patterns should shift to better align with these priorities so that autism research may better serve the needs of the autism community.

scholarly journals Current advances of epigenetics in periodontology from ENCODE project: a review and future perspectives

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Young-Dan Cho ◽  
Woo-Jin Kim ◽  
Hyun-Mo Ryoo ◽  
Hong-Gee Kim ◽  
Kyoung-Hwa Kim ◽  
...  
Keyword(s):  
Large Scale ◽  
Periodontal Diseases ◽  
Research Trends ◽  
Main Body ◽  
Research Projects ◽  
Encode Project ◽  
Dna Elements ◽  
Crucial Information ◽  
Future Direction ◽  
Systemic Health

Abstract Background The Encyclopedia of DNA Elements (ENCODE) project has advanced our knowledge of the functional elements in the genome and epigenome. The aim of this article was to provide the comprehension about current research trends from ENCODE project and establish the link between epigenetics and periodontal diseases based on epigenome studies and seek the future direction. Main body Global epigenome research projects have emphasized the importance of epigenetic research for understanding human health and disease, and current international consortia show an improved interest in the importance of oral health with systemic health. The epigenetic studies in dental field have been mainly conducted in periodontology and have focused on DNA methylation analysis. Advances in sequencing technology have broadened the target for epigenetic studies from specific genes to genome-wide analyses. Conclusions In line with global research trends, further extended and advanced epigenetic studies would provide crucial information for the realization of comprehensive dental medicine and expand the scope of ongoing large-scale research projects.

scholarly journals Diagnosis of tuberculosis in wildlife: a systematic review

2021 ◽  
Vol 52 (1) ◽  
Author(s):  
Jobin Thomas ◽  
Ana Balseiro ◽  
Christian Gortázar ◽  
María A. Risalde
Keyword(s):  
Systematic Review ◽  
Test Performance ◽  
Diagnostic Tests ◽  
Large Scale ◽  
Diagnostic Techniques ◽  
Review Literature ◽  
Meat Industry ◽  
Post Mortem ◽  
Serological Tests ◽  
Ongoing Research

AbstractAnimal tuberculosis (TB) is a multi-host disease caused by members of the Mycobacterium tuberculosis complex (MTC). Due to its impact on economy, sanitary standards of milk and meat industry, public health and conservation, TB control is an actively ongoing research subject. Several wildlife species are involved in the maintenance and transmission of TB, so that new approaches to wildlife TB diagnosis have gained relevance in recent years. Diagnosis is a paramount step for screening, epidemiological investigation, as well as for ensuring the success of control strategies such as vaccination trials. This is the first review that systematically addresses data available for the diagnosis of TB in wildlife following the Preferred Reporting Items of Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The article also gives an overview of the factors related to host, environment, sampling, and diagnostic techniques which can affect test performance. After three screenings, 124 articles were considered for systematic review. Literature indicates that post-mortem examination and culture are useful methods for disease surveillance, but immunological diagnostic tests based on cellular and humoral immune response detection are gaining importance in wildlife TB diagnosis. Among them, serological tests are especially useful in wildlife because they are relatively inexpensive and easy to perform, facilitate large-scale surveillance and can be used both ante- and post-mortem. Currently available studies assessed test performance mostly in cervids, European badgers, wild suids and wild bovids. Research to improve diagnostic tests for wildlife TB diagnosis is still needed in order to reach accurate, rapid and cost-effective diagnostic techniques adequate to a broad range of target species and consistent over space and time to allow proper disease monitoring.

scholarly journals TRACING THE EMERGENCE OF DESIGN PROBLEMS AND THEIR IMPACTS ON THE COMPLEXITY OF ENGINEERING SOLUTIONS

2021 ◽  
Vol 1 ◽  
pp. 3229-3238
Author(s):  
Torben Beernaert ◽  
Pascal Etman ◽  
Maarten De Bock ◽  
Ivo Classen ◽  
Marco De Baar
Keyword(s):  
Large Scale ◽  
Fusion Reactor ◽  
Design Stage ◽  
Engineering Model ◽  
Design Problems ◽  
Nuclear Fusion Reactor ◽  
Early Design Stage ◽  
Iterative Design ◽  
Problems And Solutions ◽  
Emergent Design

AbstractThe design of ITER, a large-scale nuclear fusion reactor, is intertwined with profound research and development efforts. Tough problems call for novel solutions, but the low maturity of those solutions can lead to unexpected problems. If designers keep solving such emergent problems in iterative design cycles, the complexity of the resulting design is bound to increase. Instead, we want to show designers the sources of emergent design problems, so they may be dealt with more effectively. We propose to model the interplay between multiple problems and solutions in a problem network. Each problem and solution is then connected to a dynamically changing engineering model, a graph of physical components. By analysing the problem network and the engineering model, we can (1) derive which problem has emerged from which solution and (2) compute the contribution of each design effort to the complexity of the evolving engineering model. The method is demonstrated for a sequence of problems and solutions that characterized the early design stage of an optical subsystem of ITER.

scholarly journals A Large-Scale COVID-19 Twitter Chatter Dataset for Open Scientific Research—An International Collaboration

Epidemiologia ◽  
2021 ◽  
Vol 2 (3) ◽  
pp. 315-324
Author(s):  
Juan M. Banda ◽  
Ramya Tekumalla ◽  
Guanyu Wang ◽  
Jingyuan Yu ◽  
Tuo Liu ◽  
...  
Keyword(s):  
Large Scale ◽  
Social Dynamics ◽  
Additional Data ◽  
Open Data ◽  
Data Sources ◽  
Research Projects ◽  
Research Groups ◽  
The World ◽  
Data Source

As the COVID-19 pandemic continues to spread worldwide, an unprecedented amount of open data is being generated for medical, genetics, and epidemiological research. The unparalleled rate at which many research groups around the world are releasing data and publications on the ongoing pandemic is allowing other scientists to learn from local experiences and data generated on the front lines of the COVID-19 pandemic. However, there is a need to integrate additional data sources that map and measure the role of social dynamics of such a unique worldwide event in biomedical, biological, and epidemiological analyses. For this purpose, we present a large-scale curated dataset of over 1.12 billion tweets, growing daily, related to COVID-19 chatter generated from 1 January 2020 to 27 June 2021 at the time of writing. This data source provides a freely available additional data source for researchers worldwide to conduct a wide and diverse number of research projects, such as epidemiological analyses, emotional and mental responses to social distancing measures, the identification of sources of misinformation, stratified measurement of sentiment towards the pandemic in near real time, among many others.

Methodology for Evaluating Inlet Protection Practices Using Large-Scale Testing Techniques

2015 ◽  
Vol 20 (4) ◽  
pp. 04014049 ◽  
Author(s):  
M. A. Perez ◽  
W. C. Zech ◽  
W. N. Donald ◽  
X. Fang
Keyword(s):  
Large Scale ◽  
Large Scale Testing ◽  
Testing Techniques

scholarly journals How to manage large-scale collaborative genomics research projects?

2017 ◽  
Vol 25 (5) ◽  
pp. 656-656
Author(s):  
Erinija Pranckevičienė ◽  
Vaidutis Kučinskas
Keyword(s):  
Large Scale ◽  
Research Projects ◽  
Genomics Research

Social Status in an Open-Source Community

2005 ◽  
Vol 70 (5) ◽  
pp. 823-842 ◽  
Author(s):  
Daniel Stewart
Keyword(s):  
Open Source ◽  
Online Community ◽  
Large Scale ◽  
Social Cues ◽  
Natural Setting ◽  
Laboratory Setting ◽  
Community Members ◽  
Software Developers ◽  
Status Mobility ◽  
The Status

Despite a fair amount of conjecture regarding the circumstances that lead to the generation of status orders, most of the previous literature in this area typically has studied the effects of social cues within a laboratory setting. This article analyzes the evolution of the status hierarchy within a large-scale, natural setting. The results of empirical analyses assessing a large online community of software developers show that in the process of status attainment, community members tend to evaluate a focal actor's reputation according to publicly available social references. Ironically, these same social references also work to constrain an actor's status mobility.

Sign in / Sign up

Export Citation Format

Share Document