105 research outputs found

    Towards reproducible and respectful autism research: Combining open and participatory autism research practices

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    Background Open research broadly refers to a set of practices that aim to increase transparency, rigor, reproducibility and inclusivity of research. Participatory research refers to incorporating the views and sharing power with the autism community to decide what research gets done, how it is done and how it is implemented. There is growing interest in both open and participatory practices in autism research. To date, however, these practices have tended to be considered separately. Method In this paper, we outline the value of both open and participatory approaches to the autism research field, highlighting key points of overlap. Results We propose three core principles underpinning open and participatory autism research: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. Conclusion There are various challenges and opportunities of adopting open and participatory principles in autism research. We hope our principles support researchers to embed these approaches more fully within their work.publishedVersio

    Congressional Liaison Offices of Selected Federal Agencies

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    This list of about 150 congressional liaison offices is intended to help congressional offices in placing telephone calls and addressing correspondence to government agencies. In each case, the information was supplied by the agency itself and is current as of the date of publication. Entries are arranged alphabetically in four sections: legislative branch; judicial branch; executive branch; and agencies, boards, and commissions

    Between Grassroots and the Hierarchy: Lessons Learned from the Design of a Public Services Directory

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    There is a growing interest in HCI research studying technology for citizen engagement in civic issues. We are now seeing issues around technologies for empowerment and participation, long discussed in HCI literature, appropriated and formalised in government legislation. In the UK, recent reforms stipulate that community-based service information should be published in continuously updated, collaboratively designed and maintained, online platforms. We report on a qualitative study where we worked with stakeholders involved in the collaborative design, development and implementation of such a platform. Our findings highlight tensions between the grassroots desire to innovate and local governments’ rigid compliance with statutory obligation. We pose a series of challenges and opportunities for HCI researchers engaged in the design of civic technologies to consider going forward, addressing issues of engagement in policy, measures of participation and tools for enabling participatory processes in public institutions

    Insights into the intracellular localization, protein associations and artemisinin resistance properties of Plasmodium falciparum K13

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    The emergence of artemisinin (ART) resistance in Plasmodium falciparum intra-erythrocytic parasites has led to increasing treatment failure rates with first-line ART-based combination therapies in Southeast Asia. Decreased parasite susceptibility is caused by K13 mutations, which are associated clinically with delayed parasite clearance in patients and in vitro with an enhanced ability of ring-stage parasites to survive brief exposure to the active ART metabolite dihydroartemisinin. Herein, we describe a panel of K13-specific monoclonal antibodies and gene-edited parasite lines co-expressing epitope-tagged versions of K13 in trans. By applying an analytical quantitative imaging pipeline, we localize K13 to the parasite endoplasmic reticulum, Rab-positive vesicles, and sites adjacent to cytostomes. These latter structures form at the parasite plasma membrane and traffic hemoglobin to the digestive vacuole wherein artemisinin-activating heme moieties are released. We also provide evidence of K13 partially localizing near the parasite mitochondria upon treatment with dihydroartemisinin. Immunoprecipitation data generated with K13-specific monoclonal antibodies identify multiple putative K13-associated proteins, including endoplasmic reticulum-resident molecules, mitochondrial proteins, and Rab GTPases, in both K13 mutant and wild-type isogenic lines. We also find that mutant K13-mediated resistance is reversed upon co-expression of wild-type or mutant K13. These data help define the biological properties of K13 and its role in mediating P. falciparum resistance to ART treatment

    The Fourteenth Data Release of the Sloan Digital Sky Survey: First Spectroscopic Data from the extended Baryon Oscillation Spectroscopic Survey and from the second phase of the Apache Point Observatory Galactic Evolution Experiment

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    The fourth generation of the Sloan Digital Sky Survey (SDSS-IV) has been in operation since July 2014. This paper describes the second data release from this phase, and the fourteenth from SDSS overall (making this, Data Release Fourteen or DR14). This release makes public data taken by SDSS-IV in its first two years of operation (July 2014-2016). Like all previous SDSS releases, DR14 is cumulative, including the most recent reductions and calibrations of all data taken by SDSS since the first phase began operations in 2000. New in DR14 is the first public release of data from the extended Baryon Oscillation Spectroscopic Survey (eBOSS); the first data from the second phase of the Apache Point Observatory (APO) Galactic Evolution Experiment (APOGEE-2), including stellar parameter estimates from an innovative data driven machine learning algorithm known as "The Cannon"; and almost twice as many data cubes from the Mapping Nearby Galaxies at APO (MaNGA) survey as were in the previous release (N = 2812 in total). This paper describes the location and format of the publicly available data from SDSS-IV surveys. We provide references to the important technical papers describing how these data have been taken (both targeting and observation details) and processed for scientific use. The SDSS website (www.sdss.org) has been updated for this release, and provides links to data downloads, as well as tutorials and examples of data use. SDSS-IV is planning to continue to collect astronomical data until 2020, and will be followed by SDSS-V.Comment: SDSS-IV collaboration alphabetical author data release paper. DR14 happened on 31st July 2017. 19 pages, 5 figures. Accepted by ApJS on 28th Nov 2017 (this is the "post-print" and "post-proofs" version; minor corrections only from v1, and most of errors found in proofs corrected

    Subjective Cognitive Decline in Older Adults: An Overview of Self-Report Measures Used Across 19 International Research Studies

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    Research increasingly suggests that subjective cognitive decline (SCD) in older adults, in the absence of objective cognitive dysfunction or depression, may be a harbinger of non-normative cognitive decline and eventual progression to dementia. Little is known, however, about the key features of self-report measures currently used to assess SCD. The Subjective Cognitive Decline Initiative (SCD-I) Working Group is an international consortium established to develop a conceptual framework and research criteria for SCD (Jessen et al., 2014, Alzheimers Dement 10, 844-852). In the current study we systematically compared cognitive self-report items used by 19 SCD-I Working Group studies, representing 8 countries and 5 languages. We identified 34 self-report measures comprising 640 cognitive self-report items. There was little overlap among measures- approximately 75% of measures were used by only one study. Wide variation existed in response options and item content. Items pertaining to the memory domain predominated, accounting for about 60% of items surveyed, followed by executive function and attention, with 16% and 11% of the items, respectively. Items relating to memory for the names of people and the placement of common objects were represented on the greatest percentage of measures (56% each). Working group members reported that instrument selection decisions were often based on practical considerations beyond the study of SCD specifically, such as availability and brevity of measures. Results document the heterogeneity of approaches across studies to the emerging construct of SCD. We offer preliminary recommendations for instrument selection and future research directions including identifying items and measure formats associated with important clinical outcome
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