Status of sonic boom methodology and understanding

In January 1988, approximately 60 representatives of industry, academia, government, and the military gathered at NASA-Langley for a 2 day workshop on the state-of-the-art of sonic boom physics, methodology, and understanding. The purpose of the workshop was to assess the sonic boom area, to determine areas where additional sonic boom research is needed, and to establish some strategies and priorities in this sonic boom research. Attendees included many internationally recognized sonic boom experts who had been very active in the Supersonic Transport (SST) and Supersonic Cruise Aircraft Research Programs of the 60's and 70's. Summaries of the assessed state-of-the-art and the research needs in theory, minimization, atmospheric effects during propagation, and human response are given

The Other Fifty Percent: Expressions From Special Education Teachers About Why They Persist in the Profession

We examined reasons special educators are motivated to persist in the profession despite challenges that often lead to attrition for this group. Participants were 21 special education teachers with six or more years of teaching experience across multiple grade levels. Data were collected via the Zoom virtual meeting platform with four focus groups. Semi-structured interview techniques were used, and data were analyzed using deductive coding procedures. Participants shared external, employment, and personal factors associated with Billingsley’s (1993) career decision framework that influenced their persistence, such as supports from school administrators with expertise in special education law, passion for students and their achievement, and stressors related to the workforce that motivated them to persist in the profession. Implications for educational practice and future research are discussed

Neural measures of social attention across the first years of life: characterizing typical development and markers of autism risk

We would like to thank the Infant Sibling Project staff, past and present, for their hard work in collecting these data. We are very grateful for the assistance of Brandon Keehn, Alexandra Libby and Ella Kipervasser with data processing, and we thank Vanessa Vogel-Farley for her constant guidance. Finally, we want to acknowledge the very dedicated families who committed years of their lives to the Infant Sibling Project and who made this work possible. Funding was provided by NIH (R21DC08637) to H.T-F., NIDCD (1R01DC010290-01) to C.A.N. and H. T-F., the Simons Foundation (137186) to C.A.N. and the Autism Speaks Pilot Grants Program to H.T-F. (R21DC08637 - NIH; 1R01DC010290-01 - NIDCD; 137186 - Simons Foundation; Autism Speaks Pilot Grants Program)Published versio

Supporting Parental Decisions About Genomic Sequencing for Newborn Screening: The NC NEXUS Decision Aid

Advances in genomic sequencing technology have raised fundamental challenges to the traditional ways genomic information is communicated. These challenges will become increasingly complex and will affect a much larger population in the future if genomics is incorporated into standard newborn screening practice. Clinicians, public health officials, and other stakeholders will need to agree on the types of information that they should seek and communicate to parents. Currently, few evidence-based and validated tools are available to support parental informed decision-making. These tools will be necessary as genomics is integrated into clinical practice and public health systems. In this article we describe how the North Carolina Newborn Exome Sequencing for Universal Screening study is addressing the need to support parents in making informed decisions about the use of genomic testing in newborn screening. We outline the context for newborn screening and justify the need for parental decision support. We also describe the process of decision aid development and the data sources, processes, and best practices being used in development. By the end of the study, we will have an evidenced-based process and validated tools to support parental informed decision-making about the use of genomic sequencing in newborn screening. Data from the study will help answer important questions about which genomic information ought to be sought and communicated when testing newborns

Prenatal exome sequencing in anomalous fetuses: new opportunities and challenges

We investigated the diagnostic and clinical performance of exome sequencing (ES) in fetuses with sonographic abnormalities with normal karyotype, microarray and, in some cases, normal gene specific sequencing

Meaningful informed consent with young children: looking forward through an interactive narrative approach

Ideas about ethical research with young children are evolving at a rapid rate. Not only can young children participate in the informed consent process, but researchers now also recognize that the process must be meaningful for them. As part of a larger study, this article reviews children's rights and informed consent literature as the foundation for the development of a new conceptual model of meaningful early childhood informed consent. Based on this model, an ‘interactive narrative’ approach is presented as a means to inform three- to eight-year-old children about what their participation might involve and to assist them to understand and respond as research participants. For use with small groups, this approach revolves around a storybook based on research-related factual images delivered via interactive (re)telling. This narrative approach to informed consent is unique in its holistic design which seeks to address the specific needs of young children in research

Community access to primary care is an important geographic disparity among ovarian cancer patients undergoing cytoreductive surgery

OBJECTIVE: Given the importance of understanding neighborhood context and geographic access to care on individual health outcomes, we sought to investigate the association of community primary care (PC) access on postoperative outcomes and survival in ovarian cancer patients. METHODS: This was a retrospective cohort study of Stage III-IV ovarian cancer patients who underwent surgery at a single academic, tertiary care hospital between 2012 and 2015. PC access was determined using a Health Resources and Services Administration designation. Outcomes included 30-day surgical and medical complications, extended hospital stay, ICU admission, hospital readmission, progression-free and overall survival. Descriptive statistics and chi-squared analyses were used to analyze differences between patients from PC-shortage vs not PC-shortage areas. RESULTS: Among 217 ovarian cancer patients, 54.4 % lived in PC-shortage areas. They were more likely to have Medicaid or no insurance and live in rural areas with higher poverty rates, significantly further from the treating cancer center and its affiliated hospital. Nevertheless, 49.2 % of patients from PC-shortage areas lived in urban communities. Residing in a PC-shortage area was not associated with increased surgical or medical complications, ICU admission, or hospital readmission, but was linked to more frequent prolonged hospitalization (26.3 % vs 14.1 %, p = 0.04). PC-shortage did not impact progression-free or overall survival. CONCLUSIONS: Patients from PC-shortage areas may require longer inpatient perioperative care in order to achieve the same 30-day postoperative outcomes as patients who live in non-PC shortage areas. Community access to PC is a critical factor to better understanding and reducing disparities among ovarian cancer patients

Compliance or pragmatism: How do academics deal with managerialism in higher education? A comparative study in three countries

Universities throughout Europe have adopted organisational strategies, structures, technologies, management instruments and values that are commonly found in the private sector. While these alleged managerial measures may be considered useful, and have a positive effect on the quality of teaching and research, there is also evidence of detrimental effects on primary tasks. The consequences of such managerial measures were investigated through 48 interviews with staff members at 10 universities in the Netherlands, Sweden and the UK. The results were analysed and interpreted within the framework of institutional and professional theory, by linking them to three central themes: 'symbolic compliance', 'professional pragmatism' and 'formal instrumentality'. These themes explain why and how the respondents dissociated themselves from the managerial measures imposed upon them. This occurred often for pragmatic and occasionally for principled reasons. © 2012 Society for Research into Higher Education

Evaluating parents’ decisions about next-generation sequencing for their child in the NC NEXUS (North Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized controlled trial protocol

Abstract Background Using next-generation sequencing (NGS) in newborn screening (NBS) could expand the number of genetic conditions detected pre-symptomatically, simultaneously challenging current precedents, raising ethical concerns, and extending the role of parental decision-making in NBS. The NC NEXUS (Newborn Exome Sequencing for Universal Screening) study seeks to assess the technical possibilities and limitations of NGS-NBS, devise and evaluate a framework to convey various types of genetic information, and develop best practices for incorporating NGS-NBS into clinical care. The study is enrolling both a healthy cohort and a cohort diagnosed with known disorders identified through recent routine NBS. It uses a novel age-based metric to categorize a priori the large amount of data generated by NGS-NBS and interactive online decision aids to guide parental decision-making. Primary outcomes include: (1) assessment of NGS-NBS sensitivity, (2) decision regret, and (3) parental decision-making about NGS-NBS, and, for parents randomized to have the option of requesting them, additional findings (diagnosed and healthy cohorts). Secondary outcomes assess parents’ reactions to the study and to decision-making. Methods/design Participants are parents and children in a well-child cohort recruited from a prenatal clinic and a diagnosed cohort recruited from pediatric clinics that treat children with disorders diagnosed through traditional NBS (goal of 200 children in each cohort). In phase 1, all parent participants use an online decision aid to decide whether to accept NGS-NBS for their child and provide consent for NGS-NBS. In phase 2, parents who consent to NGS-NBS are randomized to a decision arm or control arm (2:1 allocation) and learn their child’s NGS-NBS results, which include conditions from standard (non-NGS) NBS plus other highly actionable childhood-onset conditions. Parents in the decision arm use a second decision aid to make decisions about additional results from their child’s sequencing. In phase 3, decision arm participants learn additional results they have requested. Online questionnaires are administered at up to five time points. Discussion NC NEXUS will use a rigorous interdisciplinary approach designed to collect rich data to inform policy, practice, and future research. Trial registration clinicaltrials.gov, NCT02826694 . Registered on 11 July, 2016