Participatory Archival Research and Development: The Born-Digital Access Initiative

In an effort to advance the professional discourse around establishing best practices for access to born-digital archival collections, we designed a multi-phase, mixed-methods initiative, begun in 2014, that aimed to identify gaps and challenges in existing access methods and identify plans for how cultural heritage organizations hoped to improve access practices in the future. Over the course of our collaboration, our goals quickly evolved beyond the scope of collecting and publishing a static data set. We were inspired by models of research in practice, participatory action research, and research and development to translate our results into action by using the data to kickstart collaborative progress towards the future of archival practice. Through this paper, we synthesized our personal experiences of conducting the study, our exploration of existing models, and our aims and hopes for the future of research in our field into a framework for research in practice called Participatory Archival Research and Development (PAR&D)

History of Women\u27s Education Open Access Portal Project

White Paper prepared for the National Endowment for the Humanities Division of Preservation and Access, Humanities Collections and Reference Resources as part of a grant for the History of Women\u27s Education Open Access Portal Project

You Have the Right to Remain Silent: True Rights Statement Confessions

Panel summary: Have you ever had any questions or concerns about rights statements but didn’t know who to ask? Need to confess a rights statements blunder? Following the launch of RightsStatements.org, many DPLA Hubs have started discussions about standardizing rights statements for digital collections. This BOF session will bring together various experts from mid-Atlantic DPLA Hubs who have implemented standardized rights statements for digital collections, worked on education and training for its constituent institutions’ digital collections, or have done rights statements analyses across their home institution or constituent collections. The ultimate goal of the session will help build collective awareness and skills among digital collections managers or interested archivists for implementing standardized rights statements in an open and understanding space. Participants are welcome and encouraged to bring any and all rights statements for review, questions, or confessions. They can share tales of heartbreak, confusion, and woe and we will help troubleshoot and commiserate.MARAC Spring 2018 birds-of-a-feather panel on rights statements for digital collections

PTSD and Depressive Symptoms as Potential Mediators of the Association between World Trade Center Exposure and Subjective Cognitive Concerns in Rescue/Recovery Workers

We observed that World Trade Center (WTC) exposure, post-traumatic stress disorder (PTSD) symptoms and depressive symptoms were associated with subjective cognitive concerns in Fire Department of the City of New York (FDNY) rescue/recovery workers. This follow-up study examined whether PTSD symptoms and/or depressive symptoms mediate the observed association between WTC exposure and subjective cognitive concerns. We included WTC-exposed FDNY workers who completed the Cognitive Function Instrument (CFI), measuring self-perceived cognitive decline (N = 9516). PTSD symptoms and depressive symptoms were assessed using the PCL-S and CES-D, respectively. Multivariable linear regression estimated the association between WTC exposure and CFI score, adjusting for confounders. Mediation analyses followed the methods of Vanderweele (2014). Participants’ average age at CFI assessment was 56.6 ± 7.6 years. Higher-intensity WTC exposure was associated with worse CFI score, an effect that was entirely mediated by PTSD symptoms (%mediated: 110.9%; 95%CI: 83.1–138.9). When substituting depressive symptoms for PTSD symptoms, the WTC exposure–CFI association was largely mediated (%mediated: 82.1%; 95%CI: 60.6–103.7). Our findings that PTSD symptoms and depressive symptoms mediate the association between WTC exposure and subjective cognitive concerns indicate that in the absence of these symptoms, WTC exposure in rescue/recovery workers would not be associated with subjective cognition. Interventions targeting PTSD and depression may have additional value in mitigating cognitive decline in WTC-exposed populations

Ultra-fast yttrium hydride chemistry at high pressures via non-equilibrium states induced by x-ray free electron laser

Controlling the formation and stoichiometric content of desired phases of materials has become a central interest for the study of a variety of fields, notably high temperature superconductivity under extreme pressures. The further possibility of accessing metastable states by initiating reactions by x-ray triggered mechanisms over ultra-short timescales is enabled with the development of x-ray free electron lasers (XFEL). Utilizing the exceptionally high brilliance x-ray pulses from the EuXFEL, we report the synthesis of a previously unobserved yttrium hydride under high pressure, along with non-stoichiometric changes in hydrogen content as probed at a repetition rate of 4.5\,MHz using time-resolved x-ray diffraction. Exploiting non-equilibrium pathways we synthesize and characterize a hydride with yttrium cations in an \textit{A}15 structure type at 125\,GPa, predicted using crystal structure searches, with a hydrogen content between 4.0--5.75 hydrogens per cation, that is enthalpically metastable on the convex hull. We demonstrate a tailored approach to changing hydrogen content using changes in x-ray fluence that is not accessible using conventional synthesis methods, and reveals a new paradigm in metastable chemical physics

Glycans in Sera of Amyotrophic Lateral Sclerosis Patients and Their Role in Killing Neuronal Cells

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease caused by degeneration of upper and lower motor neurons. To date, glycosylation patterns of glycoproteins in fluids of ALS patients have not been described. Moreover, the aberrant glycosylation related to the pathogenesis of other neurodegenerative diseases encouraged us to explore the glycome of ALS patient sera. We found high levels of sialylated glycans and low levels of core fucosylated glycans in serum-derived N-glycans of patients with ALS, compared to healthy volunteer sera. Based on these results, we analyzed the IgG Fc N297-glycans, as IgG are major serum glycoproteins affected by sialylation or core fucosylation and are found in the motor cortex of ALS patients. The analyses revealed a distinct glycan, A2BG2, in IgG derived from ALS patient sera (ALS-IgG). This glycan increases the affinity of IgG to CD16 on effector cells, consequently enhancing Antibody-Dependent Cellular Cytotoxicity (ADCC). Therefore, we explore whether the Fc-N297-glycans of IgG may be involved in ALS disease. Immunostaining of brain and spinal cord tissues revealed over-expression of CD16 and co-localization of intact ALS-IgG with CD16 and in brain with activated microglia of G93A-SOD1 mice. Intact ALS-IgG enhanced effector cell activation and ADCC reaction in comparison to sugar-depleted or control IgG. ALS-IgG were localized in the synapse between brain microglia and neurons of G93A-SOD1 mice, manifesting a promising in vivo ADCC reaction. Therefore, glycans of ALS-IgG may serve as a biomarker for the disease and may be involved in neuronal damage

The impact of a brief lifestyle intervention delivered by generalist community nurses (CN SNAP trial)

BackgroundThe risk factors for chronic disease, smoking, poor nutrition, hazardous alcohol consumption, physical inactivity and weight (SNAPW) are common in primary health care (PHC) affording opportunity for preventive interventions. Community nurses are an important component of PHC in Australia. However there has been little research evaluating the effectiveness of lifestyle interventions in routine community nursing practice. This study aimed to address this gap in our knowledge.MethodsThe study was a quasi-experimental trial involving four generalist community nursing (CN) services in New South Wales, Australia. Two services were randomly allocated to an ‘early intervention’ and two to a ‘late intervention’ group. Nurses in the early intervention group received training and support in identifying risk factors and offering brief lifestyle intervention for clients. Those in the late intervention group provided usual care for the first 6 months and then received training. Clients aged 30–80 years who were referred to the services between September 2009 and September 2010 were recruited prior to being seen by the nurse and baseline self-reported data collected. Data on their SNAPW risk factors, readiness to change these behaviours and advice and referral received about their risk factors in the previous 3 months were collected at baseline, 3 and 6 months. Analysis compared changes using univariate and multilevel regression techniques.Results804 participants were recruited from 2361 (34.1%) eligible clients. The proportion of clients who recalled receiving dietary or physical activity advice increased between baseline and 3 months in the early intervention group (from 12.9 to 23.3% and 12.3 to 19.1% respectively) as did the proportion who recalled being referred for dietary or physical activity interventions (from 9.5 to 15.6% and 5.8 to 21.0% respectively). There was no change in the late intervention group. There a shift towards greater readiness to change in those who were physically inactive in the early but not the comparison group. Clients in both groups reported being more physically active and eating more fruit and vegetables but there were no significant differences between groups at 6 months.ConclusionThe study demonstrated that although the intervention was associated with increases in advice and referral for diet or physical activity and readiness for change in physical activity, this did not translate into significant changes in lifestyle behaviours or weight. This suggests a need to facilitate referral to more intensive long-term interventions for clients with risk factors identified by primary health care nurses

Food Consumption and its Impact on Cardiovascular Disease: Importance of Solutions Focused on the Globalized Food System A Report From the Workshop Convened by the World Heart Federation

Major scholars in the field, based on a 3-day consensus, created an in-depth review of current knowledge on the role of diet in CVD, the changing global food system and global dietary patterns, and potential policy solutions. Evidence from different countries, age/race/ethnicity/socioeconomic groups suggest the health effects studies of foods, macronutrients, and dietary patterns on CVD appear to be far more consistent though regional knowledge gaps are highlighted. There are large gaps in knowledge about the association of macronutrients to CVD in low- and middle-income countries (LMIC), particularly linked with dietary patterns are reviewed. Our understanding of foods and macronutrients in relationship to CVD is broadly clear; however major gaps exist both in dietary pattern research and ways to change diets and food systems. Based on the current evidence, the traditional Mediterranean-type diet, including plant foods/emphasizing plant protein sources, provides a well-tested healthy dietary pattern to reduce CV

Embracing monogenic Parkinson's disease: the MJFF Global Genetic PD Cohort

© 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.Background: As gene-targeted therapies are increasingly being developed for Parkinson's disease (PD), identifying and characterizing carriers of specific genetic pathogenic variants is imperative. Only a small fraction of the estimated number of subjects with monogenic PD worldwide are currently represented in the literature and availability of clinical data and clinical trial-ready cohorts is limited. Objective: The objectives are to (1) establish an international cohort of affected and unaffected individuals with PD-linked variants; (2) provide harmonized and quality-controlled clinical characterization data for each included individual; and (3) further promote collaboration of researchers in the field of monogenic PD. Methods: We conducted a worldwide, systematic online survey to collect individual-level data on individuals with PD-linked variants in SNCA, LRRK2, VPS35, PRKN, PINK1, DJ-1, as well as selected pathogenic and risk variants in GBA and corresponding demographic, clinical, and genetic data. All registered cases underwent thorough quality checks, and pathogenicity scoring of the variants and genotype-phenotype relationships were analyzed. Results: We collected 3888 variant carriers for our analyses, reported by 92 centers (42 countries) worldwide. Of the included individuals, 3185 had a diagnosis of PD (ie, 1306 LRRK2, 115 SNCA, 23 VPS35, 429 PRKN, 75 PINK1, 13 DJ-1, and 1224 GBA) and 703 were unaffected (ie, 328 LRRK2, 32 SNCA, 3 VPS35, 1 PRKN, 1 PINK1, and 338 GBA). In total, we identified 269 different pathogenic variants; 1322 individuals in our cohort (34%) were indicated as not previously published. Conclusions: Within the MJFF Global Genetic PD Study Group, we (1) established the largest international cohort of affected and unaffected individuals carrying PD-linked variants; (2) provide harmonized and quality-controlled clinical and genetic data for each included individual; (3) promote collaboration in the field of genetic PD with a view toward clinical and genetic stratification of patients for gene-targeted clinical trials. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.Michael J. Fox Foundation for Parkinson's Research. Grant Number: ID 15015.02. NIHR Cambridge Biomedical Research Centre. Grant Number: BRC-1215-20014info:eu-repo/semantics/publishedVersio