Aligning National Approaches to Digital Preservation

The "Aligning National Approaches to Digital Preservation" (ANADP) conference was held at the National Library of Estonia, from May 23-25, 2011. More than 125 delegates from more than 20 countries were gathered in Tallinn, Estonia and explored how to create and sustain international collaborations to support the preservation of digital cultural memory. This publication contains a collection of peer-reviewed essays that were developed by conference panels and attendees in the months following ANADP

Open Data Meets Digital Curation: An Investigation of Practices and Needs

In the United States, research funded by the government produces a significant portion of data. US law mandates that these data should be freely available to the public through ‘public access’, which is defined as fully discoverable and usable by the public. The U.S. government executive branch supported the public access requirements by issuing an Executive Directive titled ‘Increasing Access to the Results of Federally Funded Scientific Research’ that required federal agencies with annual research and development expenditures of more than $100 million to create public access plans by 22 August 2013. The directive applied to 19 federal agencies, some with multiple divisions. Additional direction for this initiative was provided by the Executive Order ‘Making Open and Machine Readable the New Default for Government Information’ which was accompanied by a memorandum with specific guidelines for information management and instructions to find ways to reduce compliance costs through interagency cooperation. In late 2013, the Institute of Museum and Library Services (IMLS) funded the Council on Library and Information Resources (CLIR) to conduct a project to help IMLS and its constituents understand the implications of the US federal public access mandate and how needs and gaps in digital curation can best be addressed. Our project has three research components: (1) a structured content analysis of federal agency plans supporting public access to data and publications, identifying both commonalities and differences among plans; (2) case studies (interviews and analysis of project deliverables) of seven projects previously funded by IMLS to identify lessons about skills, capabilities and institutional arrangements that can facilitate data curation activities; and (3) a gap analysis of continuing education and readiness assessment of the workforce. Research and cultural institutions urgently need to rethink the professional identities of those responsible for collecting, organizing, and preserving data for future use. This paper reports on a project to help inform further investments.

The National Childrens Study: An Introduction and Historical Overview

The National Children’s Study (NCS) was an ambitious attempt to map children’s health and development in a large representative group of children in the United States. In this introduction, we briefly review the background of the NCS and the history of the multiple strategies that were tested to recruit women and children. Subsequent articles then detail the protocols and outcomes of 4 of the recruitment strategies. It is hoped that lessons learned from these attempts to define a study protocol that could achieve the initial aims of the NCS will inform future efforts to conceptualize and execute strategies to provide generalizable insights on the longitudinal health of our nation’s children

Politics, policies, and patient care: Rehabilitation therapists' experiences during the COVID-19 Pandemic

The year 2020 represents a historically turbulent period for the United States marked by the COVID-19 pandemic, a contentious political season, and heightened awareness of racism among citizens. This intersection of medicine, politics, and social unrest generated a demanding clinical environment for healthcare workers, including understudied groups such as physical therapists, occupational therapists, and speech-language pathologists. This descriptive qualitative study focused on experiences and perspectives of clinical rehabilitation therapists working in inpatient rehabilitation and acute-care units from September to November, 2020. Thirteen participants completed individual, semi-structured interviews focused on clinical practice and coping strategies. The analysis included a multi-step, inductive process. Four interconnecting factors chronicling participants' experiences emerged: sociopolitical, institutional, hospital unit, and personal. Stressors and buffers were noted that further shaped individual experiences. Utilization of an ecological framework provided a way to recognize the impact of a complex range of social and environmental factors affecting participants' experiences on personal and professional levels. Awareness of rehabilitation therapists' experiences enriches understanding of the pandemic's effect on healthcare workers and presents clinical implications for healthcare systems to promote therapist well-being

O "CC" e a patologização do natural: higiene, publicidade e modernização no Brasil do pós-Segunda Guerra Mundial

The aim of this article is to discuss the relationship between consumption and changing habits through new industrial products related to health and hygiene, which were announced as the possibility of replacing the natural odor and industrialized by artificial smell. This would represent the cultural transformation of natural physiological functions, such as sweat, something unwholesome and socially repugnant and also a synonym for backwardness. The ideal of a hygienic, modern and deodorized find life in the media and advertising - in the modernization and expansion process in the Brazil post-II World War the privileged space for the placement and supply of new and abundant products that promised to cancel the threat of "body odor" - "BO" and replace it, by the "smell good", hygienic and socially enjoyable that could be bought.O objetivo do artigo é discutir a relação entre consumo e mudança de hábitos por meio de novos produtos industrializados relacionados à saúde e à higiene, que foram anunciados como capazes de substituir o odor natural pelo cheiro artificial e industrializado. Sugerimos que foi um processo social e cultural de transformação de funções fisiológicas naturais, como o suor e o mau hálito, em algo nocivo à saúde e repugnante socialmente e também em um sinônimo de atraso. O ideal de uma vida higiênica, moderna e desodorizada encontrou na imprensa e na publicidade - em processo de modernização e expansão no Brasil após a Segunda Guerra Mundial - o espaço privilegiado para a veiculação e oferta de novos e abundantes produtos que prometiam cancelar a ameaça do "cheiro de corpo", o "CC", e substituí-lo pelo "cheiro bom", salubre e socialmente aceitável que poderia, inclusive, ser comprado

Large-scale association analysis identifies new lung cancer susceptibility loci and heterogeneity in genetic susceptibility across histological subtypes.

Although several lung cancer susceptibility loci have been identified, much of the heritability for lung cancer remains unexplained. Here 14,803 cases and 12,262 controls of European descent were genotyped on the OncoArray and combined with existing data for an aggregated genome-wide association study (GWAS) analysis of lung cancer in 29,266 cases and 56,450 controls. We identified 18 susceptibility loci achieving genome-wide significance, including 10 new loci. The new loci highlight the striking heterogeneity in genetic susceptibility across the histological subtypes of lung cancer, with four loci associated with lung cancer overall and six loci associated with lung adenocarcinoma. Gene expression quantitative trait locus (eQTL) analysis in 1,425 normal lung tissue samples highlights RNASET2, SECISBP2L and NRG1 as candidate genes. Other loci include genes such as a cholinergic nicotinic receptor, CHRNA2, and the telomere-related genes OFBC1 and RTEL1. Further exploration of the target genes will continue to provide new insights into the etiology of lung cancer

Repeated nebulisation of non-viral CFTR gene therapy in patients with cystic fibrosis:a randomised, double-blind, placebo-controlled, phase 2b trial

Background: Lung delivery of plasmid DNA encoding the CFTR gene complexed with a cationic liposome is a potential treatment option for patients with cystic fibrosis. We aimed to assess the efficacy of non-viral CFTR gene therapy in patients with cystic fibrosis. Methods: We did this randomised, double-blind, placebo-controlled, phase 2b trial in two cystic fibrosis centres with patients recruited from 18 sites in the UK. Patients (aged ≥12 years) with a forced expiratory volume in 1 s (FEV1) of 50–90% predicted and any combination of CFTR mutations, were randomly assigned, via a computer-based randomisation system, to receive 5 mL of either nebulised pGM169/GL67A gene–liposome complex or 0·9% saline (placebo) every 28 days (plus or minus 5 days) for 1 year. Randomisation was stratified by % predicted FEV1 (<70 vs ≥70%), age (<18 vs ≥18 years), inclusion in the mechanistic substudy, and dosing site (London or Edinburgh). Participants and investigators were masked to treatment allocation. The primary endpoint was the relative change in % predicted FEV1. The primary analysis was per protocol. This trial is registered with ClinicalTrials.gov, number NCT01621867. Findings: Between June 12, 2012, and June 24, 2013, we randomly assigned 140 patients to receive placebo (n=62) or pGM169/GL67A (n=78), of whom 116 (83%) patients comprised the per-protocol population. We noted a significant, albeit modest, treatment effect in the pGM169/GL67A group versus placebo at 12 months' follow-up (3·7%, 95% CI 0·1–7·3; p=0·046). This outcome was associated with a stabilisation of lung function in the pGM169/GL67A group compared with a decline in the placebo group. We recorded no significant difference in treatment-attributable adverse events between groups. Interpretation: Monthly application of the pGM169/GL67A gene therapy formulation was associated with a significant, albeit modest, benefit in FEV1 compared with placebo at 1 year, indicating a stabilisation of lung function in the treatment group. Further improvements in efficacy and consistency of response to the current formulation are needed before gene therapy is suitable for clinical care; however, our findings should also encourage the rapid introduction of more potent gene transfer vectors into early phase trials

Elevated protein concentrations in newborn blood and the risks of autism spectrum disorder, and of social impairment, at age 10 years among infants born before the 28th week of gestation

Among the 1 of 10 children who are born preterm annually in the United States, 6% are born before the third trimester. Among children who survive birth before the 28th week of gestation, the risks of autism spectrum disorder (ASD) and non-autistic social impairment are severalfold higher than in the general population. We examined the relationship between top quartile inflammation-related protein concentrations among children born extremely preterm and ASD or, separately, a high score on the Social Responsiveness Scale (SRS total score ≥65) among those who did not meet ASD criteria, using information only from the subset of children whose DAS-II verbal or non-verbal IQ was ≥70, who were assessed for ASD, and who had proteins measured in blood collected on ≥2 days (N = 763). ASD (N = 36) assessed at age 10 years is associated with recurrent top quartile concentrations of inflammation-related proteins during the first post-natal month (e.g., SAA odds ratio (OR); 95% confidence interval (CI): 2.5; 1.2–5.3) and IL-6 (OR; 95% CI: 2.6; 1.03–6.4)). Top quartile concentrations of neurotrophic proteins appear to moderate the increased risk of ASD associated with repeated top quartile concentrations of inflammation-related proteins. High (top quartile) concentrations of SAA are associated with elevated risk of ASD (2.8; 1.2–6.7) when Ang-1 concentrations are below the top quartile, but not when Ang-1 concentrations are high (1.3; 0.3–5.8). Similarly, high concentrations of TNF-α are associated with heightened risk of SRS-defined social impairment (N = 130) (2.0; 1.1–3.8) when ANG-1 concentrations are not high, but not when ANG-1 concentrations are elevated (0.5; 0.1–4.2)