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Molecular diagnostics and therapies play a central role in an era of precision medicine, with the promise of more accurate diagnoses and more effective treatments. Universal newborn screening (NBS) identifies those health conditions that must be treated in early life and before clinical symptoms become apparent, to maximize effectiveness, prevent morbidity, and reduce or eliminate mortality. However, enthusiasm about NBS as the logical platform for early identification is tempered by the realization that NBS under public health authority exists in a complex ecology in which technology and medicine intersect with politics, ethics, advocacy, and resource constraints-a classic translational challenge that is exacerbated when considering the possible introduction of genome sequencing and molecular therapies in NBS. Substantial change is inevitable if the current model of NBS can be prepared for an envisioned future of greatly expanded molecular diagnostics and therapies. A window of opportunity for modernization now exists, but what changes are needed? The purpose of this commentary is to identify five major initiatives to stimulate focused discussion on how modernization might be achieved: (1) build systems for more rapid collection and integration of extant data relevant to NBS; (2) establish a national network of NBS research centers to design and conduct prospective research studies addressing critical NBS questions; (3) create a network of regional NBS laboratories to expedite state implementation of new methodologies or screening for newly recommended conditions; (4) establish a new stream of federal funding to provide financial support for states and incentivize national harmonization; and (5) integrate solutions in a way that is strategic and effective. Some aspects of these recommendations suggest that radical policy changes are needed to implement molecular testing in NBS and take advantage of emerging molecular therapies. I focus on recommendations for modernizing NBS in the US, some of which may be applicable in other countries.

The Union-Retire CCA (UR-CCA) algorithm started a new paradigm for connected components analysis. Instead of using directed tree structures, UR-CCA focuses on connectivity. This algorithmic change leads to a reduction in required memory, with no end-of-row processing overhead. In this paper we describe a hardware architecture based on UR-CCA and its realisation on an FPGA. The memory bandwidth and pipelining challenges of hardware UR-CCA are analysed and resolved. It is shown that up to 36% of memory resources can be saved using the proposed architecture. This translates directly to a smaller device for an FPGA implementation.

Key Points Question What solutions do subject matter experts recommend to prepare newborn screening for a rapid increase in the number of transformative therapies that must be provided early in life? Findings In this survey study, 40 experts in newborn screening evaluated 20 potential solutions. The highest rated solutions addressed cross-state variability, national harmonization, data needed for clinical and policy decisions, and support to expedite state implementation. Meaning These findings suggest that a coordinated national vision that incorporates effective solutions will be needed for newborn screening to accommodate an increasing number of transformative therapies., This survey study identifies and evaluates expert recommendations for modernizing newborn screening in preparation for rapid increases in the number of novel therapies that must be provided early in life., Importance Novel therapies, including cell and gene therapies, can radically improve outcomes among patients with rare disorders, especially if provided early. Newborn screening (NBS) could support early access to novel therapies, but the speed of new therapy development is a disruptive event for which the public health NBS system and state newborn screening programs are unprepared. Objective To identify and evaluate possible solutions for modernizing NBS. Design, Setting, and Participants In this survey study, NBS experts representing clinical research, federal or state advisory boards, patient advocacy groups, industry, or state laboratories completed an online survey in which they considered 20 potential solutions for modernizing NBS and rated each. Exposures Participants considered 20 potential solutions in the 5 following domains: (1) timeliness of disorder review, (2) alternative mechanisms to offer screening for new disorders not currently part of NBS, (3) expanded data collection, (4) support for states, and (5) emerging methods of screening and their consequences. Main Outcomes and Measures Mean ratings for each solution on efficacy, acceptability, feasibility, and sustainability. Results The survey was completed by 40 NBS experts (median [range] age, 54 [37-73] years; 22 [55.0%] women). Participants acknowledged that substantial change is needed to prepare the NBS system for rapid expansion of novel therapies; on a scale of 0 (no change) to 10 (extensive change), the median (range) score was 8 (2-10), with 18 respondents (45.0%) believing that the NBS would need many new components or an entirely new system to accommodate the changes. All solutions for modernization were considered potentially efficacious by at least 23 respondents (57.5%). The 2 most strongly endorsed were to establish mechanisms for cross-state data coordination for provisional disorders (38 respondents [95.0%]) and create a network of regional screening laboratories (36 [90.0%]). These were closely followed by aligning programs across federal agencies (35 [87.5%]), expanding funding for research (34 [85.0%]), expanding funding to states (34 [85.0%]), building capacity to identify genetic variants and an associated clinical database (34 [85.0%]), and conducting surveillance to study long-term outcomes (34 [85.0%]). Conclusions and Relevance In this study, there was consensus among experts that NBS needs to change if the system is to be prepared for a rapid increase in transformative therapies. To our knowledge, this is the first systematic inventory of potential solutions for modernizing NBS and expert perceptions of each. The findings suggest that the modernization of NBS will require the integration of highly rated solutions, strategic planning, and coordination among multiple stakeholders.

Background and objectives Projections that 60 transformative cell and gene therapies could be approved by the U.S. Food and Drug Administration (FDA) within 10 years underscore an urgent need to modernize the newborn screening (NBS) system. This study convened expert stakeholders to assess challenges to the NBS system and propose solutions for its modernization. Methods NBS stakeholders (researchers, clinicians, state NBS leaders, advocates, industry professionals, and current/former advisory committee members) participated in one of five mixed-stakeholder panel discussions. Prior to panels, participants completed a survey in which they reviewed and ranked NBS challenges generated from relevant literature. During panels, participants deliberated on challenges and explored potential solutions. Pre-panel survey data were analyzed descriptively. Data from panel discussions were analyzed using a rapid qualitative analysis. Results Median scores of the ranked challenges (1 = most important) reveal the top three most important barriers to address: critical missing data for NBS decision-making (Median = 2), burden on state NBS laboratories (Median = 3), and the amount of time required for state-level implementation of screening for new conditions (Median = 4). Panel discussions were rooted in recurring themes: the infant’s well-being should be the focal point; the transformative therapy pipeline, although undeniably positive for individuals with rare diseases, is a threat to NBS capacity; decisions about modernizing NBS should be evidence-based; additional financial support is required but not sufficient for modernization; and modernization will require participation of multiple NBS stakeholders. This final overarching theme is reported in depth, including expertise, coordination, and collaboration challenges facing NBS and novel approaches to oversight, partnership, and coordination that were suggested by participants. Conclusions This study engaged representatives from multiple stakeholder groups to generate potential solutions to challenges facing NBS in the United States. These solutions provide a rich starting point for policy makers and other stakeholders who desire to maximize the impact of new transformative therapies for babies, families, and society.

An Interprofessional Education Collaborative (IPEC) Competency-focused Workshop to Optimize Team Performance G Buhr,1* T Konrad,2+ S Pinheiro,1§ J Pruitt,1★ C Poer,1$ L Shock,1^ H White,1* K Shipp,1⌘ S Devarayasamudram,3¶ M Aselage,1¶ E Egerton,1§ L Matters,1¶ E McConnell,1,4¶ M Heflin1,4* 1Duke University, 2University of North Carolina-Chapel Hill, 3North Carolina Central University, 4Durham VA Geriatric Research, Education and Clinical Center *Medicine, +Sociology, §Education, ★Dietetics, $Social Work, ^Physician Assistant, ⌘Physical Therapy, ¶Nursing

This study explored the ways in which racially and ethnically diverse patients differ in their perceptions of the cancer pain experience, barriers to treatment, and satisfaction with treatment. This cross-sectional descriptive study was conducted at four cancer treatment centers and one cancer clinic in the southeastern United States and included 66 White, African-American, Latino, and American Indian cancer patients experiencing pain related to disease or disease progression. Pain Management Index (PMI) scores were calculated and subjects provided responses to the Cancer Pain Experience questionnaire, the Barriers Questionnaire, and a modified American Pain Society Satisfaction Survey. African-Americans reported a low PMI score. Whites reported the lowest mean level of agreement with all statements about barriers to pain relief. Addressing differences in patient beliefs about what constitutes successful pain treatment and treatment satisfaction, caregiver behaviors, and system characteristics might improve the quality of care and possibly reduce the mortality of cancer patients with pain.

The Golden Rule guides people to choose for others what they would choose for themselves. The Golden Rule is often described as 'putting yourself in someone else's shoes', or 'Do unto others as you would have them do unto you'(Baumrin 2004). The viewpoint held in the Golden Rule is noted in all the major world religions and cultures, suggesting that this may be an important moral truth (Cunningham 1998). The Golden Rule underlies acts of kindness, caring, and altruism that go above and beyond "business as usual" or "usual care" (Huang, 2005). As such, this heuristic or 'rule of thumb' has universal appeal and helps guide our behaviors toward the welfare of others. So why question the Golden Rule? Unless used mindfully, any heuristic can be overly-simplistic and lead to unintended, negative consequences.A heuristic is a rule of thumb that people use to simplify potentially overwhelming or complex events. These rules of thumb are largely unconscious, and occur irrespective of training and educational level (Gilovich, GriffinKahneman 2002). Rules of thumb, such as the Golden Rule, allow a person to reduce a complex situation to something manageable-e.g., 'when in doubt, do what I would want done'. Because it is a simplifying tool, however, the Golden Rule may lead to inappropriate actions because important factors may be overlooked.In this article we describe "The Golden Rule" as used by administrators, supervisors, charge nurses, and CNAs in case studies of four nursing homes. By describing use of this rule-of-thumb, we aim to challenge nurses in nursing homes to: 1) be mindful of their use of "The Golden Rule" and its impact on staff and residents; and 2) help staff members think through how and why "The Golden Rule" may impact their relationships with staff and residents.

The Science and Engineering Lab at McClellan Air Force Base, Sacramento, Calif. has been involved in the development and use of computer-based scanning systems for NDE (nondestructive evaluation) since 1985. This paper describes the history leading up to our current applications which employ eddy current and ultrasonic scanning of aircraft structures that contain both metallics and advanced composites. The scanning is performed using industrialized computers interfaced to proprietary acquisition equipment and software. Examples are shown that image several types of damage such as exfoliation and fuselage lap joint corrosion in aluminum, impact damage, embedded foreign material, and porosity in Kevlar and graphite epoxy composites. Image analysis techniques are reported that are performed using consumer oriented computer hardware and software that are not NDE specific and not expensive

We interviewed 250 parents of Mexican and Puerto Rican origin living in the United States who had young children with developmental delays to determine the role of religion in their lives. Quantitative results indicate that parents largely viewed themselves as religious, were affiliated with a formal religion, and participated in religious activities. Most parents viewed both church and faith as supportive, but faith was shown to provide more support. Repeated measures a analysis of variance found some intragroup variations in religious support and changes in support after learning of the child's condition. Thematic analysis revealed specific religious beliefs and practices parents viewed as supportive, and content and cultural models analyses indicated the religious frameworks by which parents interpreted their child's disability.

A method is presented for the microscopic examination of asbestos-cement products. The use of petrographic thin sections and polished sections in determining composition, texture, grain size, and cement-silica reaction is described. The preparation of thin sections and polished sections, using epoxy resin as an impregnant, is outlined.

Introdução: Nas organizações de saúde, a Prática Interprofissional Colaborativa (PIC) e Clima do Trabalho em Equipe (CTE) são essenciais para promoção do cuidado integrado e melhoria na qualidade da assistência em saúde. Entretanto, a implementação da PIC tem se mostrado um desafio, com lacuna de conhecimentos relacionados a sua operacionalização no âmbito do Sistema Único de Saúde (SUS). Assim como a PIC, o CTE preocupa-se com aspectos relacionais e organizacionais do trabalho interprofissional. Poucas investigações têm explorado a relação entre PIC e CTE. Este estudo considera as implicações do CTE para a PIC, destaca as ligações teóricas e empíricas entre os dois, e sugere como o CTE pode ter um papel na compreensão e operacionalização da PIC. Objetivo geral: Analisar a PIC em equipes de Atenção Primária à Saúde (APS) com diferentes perfis de CTE. Método: estudo de método misto sequencial explanatório (quantitativo-qualitativo) realizado em 18 equipes da Estratégia Saúde da Família (ESF), em município da região metropolitana de São Paulo. Na fase 1 (quantitativa), o CTE foi avaliado com a aplicação da Escala de Clima do Trabalho em equipe (ECTE) em 18 equipes da ESF (N=144). Para análise dos dados utilizou-se estatística descritiva, análise de agrupamentos (método Ward) e análise bivariada (t student). Na fase 2 (qualitativa), realizou-se estudo de caso múltiplo com entrevistas em profundidade com membros das equipes (N=24) que apresentaram escores contrastantes na ECTE. Na coleta e análise dos achados qualitativos foram utilizadas técnicas da teoria fundamentada em dados. Os resultados das fases 1 e 2 foram integrados. Resultados: Na fase 1 foram identificados dois agrupamentos de equipes: (A) com maiores e (B) de menores escores na ECTE. As diferenças entre os grupos foram estatisticamente significativas em todos os fatores da escala: participação na equipe (p