Introduction - Parents and Children, Children and Parents: The Disability Context

Produced by Hawai'i University Affiliated Program on Disabilities, University of Hawai'i at Manoa, Honolulu, Hawai'i, Frank Sawyer School of Management, Suffolk University, Boston, Massachusetts, and School of Social Sciences, The University of Texas at Dallas, Richardson, Texas for The Society for Disability Studies

The Status of Disability Studies in SDS and its Impact on Disability Policy

Produced by The Center on Disability Studies, University of Hawai'i at Manoa, Honolulu, Hawai'i, The Frank Sawyer School of Management, Suffolk University, Boston, Massachusetts and The School of Social Sciences, The University of Texas at Dallas, for the Society for Disability Studies

Measuring disability and monitoring the UN Convention on the Rights of Persons with Disabilities: the work of the Washington Group on Disability Statistics

The Washington Group on Disability Statistics is a voluntary working group made up of representatives of over 100 National Statistical Offices and international, non-governmental and disability organizations that was organized under the aegis of the United Nations Statistical Division. The purpose of the Washington Group is to deal with the challenge of disability definition and measurement in a way that is culturally neutral and reasonably standardized among the UN member states. The work, which began in 2001, took on added importance with the passage and ratification of the UN Convention on the Rights of Persons with Disabilities since the Convention includes a provision for monitoring whether those with and without disabilities have equal opportunities to participate in society and this will require the identification of persons with disabilities in each nation. The International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization provided a framework for conceptualizing disability. Operationalizing an ICF-based approach to disability has required the development of new measurement tools for use in both censuses and surveys. To date, a short set of six disability-related questions suitable for use in national censuses has been developed and adopted by the Washington Group and incorporated by the United Nations in their Principles and Recommendations for Population and Housing Censuses. A series of extended sets of questions is currently under development and some of the sets have been tested in several countries. The assistance of many National and International organizations has allowed for cognitive and field testing of the disability questionnaires in multiple languages and locations. This paper will describe the work of the Washington Group and explicate the applicability of its approach and the questions developed for monitoring the UN Convention on the Rights of Persons with Disabilities

The ethics of characterizing difference: guiding principles on using racial categories in human genetics

We are a multidisciplinary group of Stanford faculty who propose ten principles to guide the use of racial and ethnic categories when characterizing group differences in research into human genetic variation

Casting a wider net: Immunosurveillance by nonclassical MHC molecules

Most studies of T lymphocytes focus on recognition of classical major histocompatibility complex (MHC) class I or II molecules presenting oligopeptides, yet there are numerous variations and exceptions of biological significance based on recognition of a wide variety of nonclassical MHC molecules. These include αβ and γδ T cells that recognize different class Ib molecules (CD1, MR-1, HLA-E, G, F, et al.) that are nearly monomorphic within a given species. Collectively, these T cells can be considered “unconventional,” in part because they recognize lipids, metabolites, and modified peptides. Unlike classical MHC-specific cells, unconventional T cells generally exhibit limited T-cell antigen receptor (TCR) repertoires and often produce innate immune cell-like rapid effector responses. Exploiting this system in new generation vaccines for human immunodeficiency virus (HIV), tuberculosis (TB), other infectious agents, and cancer was the focus of a recent workshop, “Immune Surveillance by Non-classical MHC Molecules: Improving Diversity for Antigens,” sponsored by the National Institute of Allergy and Infectious Diseases. Here, we summarize salient points presented regarding the basic immunobiology of unconventional T cells, recent advances in methodologies to measure unconventional T-cell activity in diseases, and approaches to harness their considerable clinical potential

Using hospital discharge data for determining neonatal morbidity and mortality: a validation study

<p>Abstract</p> <p>Background</p> <p>Despite widespread use of neonatal hospital discharge data, there are few published reports on the accuracy of population health data with neonatal diagnostic or procedure codes. The aim of this study was to assess the accuracy of using routinely collected hospital discharge data in identifying neonatal morbidity during the birth admission compared with data from a statewide audit of selected neonatal intensive care (NICU) admissions.</p> <p>Methods</p> <p>Validation study of population-based linked hospital discharge/birth data against neonatal intensive care audit data from New South Wales, Australia for 2,432 babies admitted to NICUs, 1994–1996. Sensitivity, specificity and positive predictive values (PPV) with exact binomial confidence intervals were calculated for 12 diagnoses and 6 procedures.</p> <p>Results</p> <p>Sensitivities ranged from 37.0% for drainage of an air leak to 97.7% for very low birthweight, specificities all exceeded 85% and PPVs ranged from 70.9% to 100%. In-hospital mortality, low birthweight (≤1500 g), retinopathy of prematurity, respiratory distress syndrome, meconium aspiration, pneumonia, pulmonary hypertension, selected major anomalies, any mechanical ventilation (including CPAP), major surgery and surgery for patent ductus arteriosus or necrotizing enterocolitis were accurately identified with PPVs over 92%. Transient tachypnea of the newborn and drainage of an air leak had the lowest PPVs, 70.9% and 83.6% respectively.</p> <p>Conclusion</p> <p>Although under-ascertained, routinely collected hospital discharge data had high PPVs for most validated items and would be suitable for risk factor analyses of neonatal morbidity. Procedures tended to be more accurately recorded than diagnoses.</p

Network Structure Implied by Initial Axon Outgrowth in Rodent Cortex: Empirical Measurement and Models

The developmental mechanisms by which the network organization of the adult cortex is established are incompletely understood. Here we report on empirical data on the development of connections in hamster isocortex and use these data to parameterize a network model of early cortical connectivity. Using anterograde tracers at a series of postnatal ages, we investigate the growth of connections in the early cortical sheet and systematically map initial axon extension from sites in anterior (motor), middle (somatosensory) and posterior (visual) cortex. As a general rule, developing axons extend from all sites to cover relatively large portions of the cortical field that include multiple cortical areas. From all sites, outgrowth is anisotropic, covering a greater distance along the medial/lateral axis than along the anterior/posterior axis. These observations are summarized as 2-dimensional probability distributions of axon terminal sites over the cortical sheet. Our network model consists of nodes, representing parcels of cortex, embedded in 2-dimensional space. Network nodes are connected via directed edges, representing axons, drawn according to the empirically derived anisotropic probability distribution. The networks generated are described by a number of graph theoretic measurements including graph efficiency, node betweenness centrality and average shortest path length. To determine if connectional anisotropy helps reduce the total volume occupied by axons, we define and measure a simple metric for the extra volume required by axons crossing. We investigate the impact of different levels of anisotropy on network structure and volume. The empirically observed level of anisotropy suggests a good trade-off between volume reduction and maintenance of both network efficiency and robustness. Future work will test the model's predictions for connectivity in larger cortices to gain insight into how the regulation of axonal outgrowth may have evolved to achieve efficient and economical connectivity in larger brains

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

<p>Abstract</p> <p>Background</p> <p>Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.</p> <p>Methods/Design</p> <p>Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified.</p> <p>Discussion</p> <p>Collecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future.</p> <p>Trial registration</p> <p>National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.</p

STrengthening the REporting of Genetic Association Studies (STREGA)— An Extension of the STROBE Statement

Julian Little and colleagues present the STREGA recommendations, which are aimed at improving the reporting of genetic association studies