15 research outputs found

    Idea Lab: Outreach in the Time of a Pandemic

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    The Idea Lab within JLOE is a space to center the voices of library practitioners, with a focus on emerging practices and experimental approaches. This inaugural Idea Lab is dedicated to the creative and inspiring ways that libraries are connecting with their communities - either virtually or socially-distantly - while prioritizing health and safety for customers and for library workers. The worldwide shut down of physical library locations brought public attention to what the library community has long known–that public libraries are a last refuge for the most vulnerable members of our communities. Many libraries quickly and successfully pivoted to digital services and virtual programming, all the while understanding that these services don’t meet the needs of some of our most regular customers. People who rely on public libraries for a human connection with a staff person or another customer, internet access, a cool space on a hot day, or something as simple as a water fountain. So how have libraries responded to this urgent need to recreate our outreach and engagement strategies when our buildings are off limits and human connections are necessarily distanced by six feet or mediated through a screen? At the District of Columbia Public Library, we’re building on a foundation of strong partnerships to stay connected, deliver programs, and provide updates about library services. This looks like conducting virtual outreach through partners like the Boys & Girls Club of Greater Washington and their Clubhouse in Your House initiative and other community organizations. We’re also developing downloadable kits that partners can use to lead their own programming while taking advantage of library resources. We’re putting together programming packages and book giveaways that we can deliver to a central location - like DC Housing Authority or a summer meals distribution site - for a partner to distribute to their constituents. We know that there are critical gaps that we aren’t able to safely support right now. But I’ve never been more proud of the ingenuity and compassion of my team, my library, and of libraries around the world.Ope

    Virology under the microscope—a call for rational discourse

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    Viruses have brought humanity many challenges: respiratory infection, cancer, neurological impairment and immunosuppression to name a few. Virology research over the last 60+ years has responded to reduce this disease burden with vaccines and antivirals. Despite this long history, the COVID-19 pandemic has brought unprecedented attention to the field of virology. Some of this attention is focused on concern about the safe conduct of research with human pathogens. A small but vocal group of individuals has seized upon these concerns – conflating legitimate questions about safely conducting virus-related research with uncertainties over the origins of SARS-CoV-2. The result has fueled public confusion and, in many instances, ill-informed condemnation of virology. With this article, we seek to promote a return to rational discourse. We explain the use of gain-of-function approaches in science, discuss the possible origins of SARS-CoV-2 and outline current regulatory structures that provide oversight for virological research in the United States. By offering our expertise, we – a broad group of working virologists – seek to aid policy makers in navigating these controversial issues. Balanced, evidence-based discourse is essential to addressing public concern while maintaining and expanding much-needed research in virology

    Content Validation of the Movement Disorder-Childhood Rating Scale (MD-CRS) for Dyskinetic Cerebral Palsy

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    Background: Dyskinetic cerebral palsy (DCP), a lifelong neurological disorder beginning in early child-hood, manifests with hyperkinetic movements and dystonia. The Movement Disorder-Childhood Rating Scale (MD-CRS) is a clinician-reported outcome measure assessing the intensity of movement disorders and their effect on daily life in pediatric patients. Content validity of clinical outcome assessments is key to accurately capturing patient perspective. Evidence demonstrating content validity of the MD-CRS in patients with DCP is needed. This study captures input from patients with DCP and their caregivers regarding the content validity of the MD-CRS.Methods: This qualitative, noninterventional, cross-sectional study included interviews with children/ adolescents (aged six to 18 years) with DCP and caregivers of children with DCP. Participants were asked to describe body regions and daily functions affected by DCP. Caregivers also reviewed MD-CRS Part I to evaluate the relevance of the items and corresponding response options. Descriptions of DCP were coded and mapped to MD-CRS items and response options. Caregiver feedback on MD-CRS Part I was analyzed using inductive content analysis.Results: Eight patients and 12 caregivers were interviewed. Participants confirmed that the body regions and activities listed in the MD-CRS were affected by DCP and that involuntary movements interfered with all motor, oral/verbal, self-care, and video protocol activities. Caregivers endorsed the response options for 12 of 15 items in MD-CRS Part I and suggested clarifications for others.Conclusions: Participants confirmed that affected body regions and activities listed in the MD-CRS were relevant to their experience with DCP, demonstrating the content validity of this tool in children/ado-lescents with DCP.(c) 2022 Published by Elsevier Inc

    Workshop on Unavoidable Survey Effort Reduction 2 (WKUSER2)

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    The Workshop on Unavoidable Survey Effort Reduction 2 (WKUSER2) focused on best-available approaches that can minimize information loss and ensure continuity in survey time series when unavoidable changes to survey effort occur. WKUSER2 recognised that reductions, reallocations, or increases in survey effort present similar set of problems, and therefore concentrated on all aspects of survey effort changes. The workshop reviewed available research, current practices, and recommended future directions on four key topics: (i) key elements of flexibility of a survey, (ii) why and how to combine data from different sources (e.g. surveys, fishery sampling) and deal with survey gaps, (iii) how to configure estimation and simulation models, and (iv) review existing tools and technology to evaluate consequences of survey effort changes.Road maps were developed for the key topic areas i, ii, iii, and iv, whenever possible, to assist scientists and survey managers in making decisions on how to evaluate and mitigate the impact of survey effort changes on data and advice quality. Many tools are available or are being developed for that purpose, but the group recognized two important needs during the workshop: i) defining clear objectives and priorities of a survey, which are essential to properly evaluate con- sequences of survey changes; and ii) making all tools accessible, reproducible, and transparent to benefit the whole community. This requires organisational and cultural shift to create support systems that ensure the development and sustainability of such tools in the future
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