Pioneering the Field of Deaf Women’s Studies

This article is written by three Deaf women-scholars who pioneered Deaf Women’s Studies (DWS) about thirty plus years ago: the discipline arose from the need to explore the Deaf female experience (Kelly, 2016). Then, the 1990’s was when the DWS coursework was first developed and offered in American academia. To gain a greater understanding for DWS, the article begins by reviewing the emergence of both Black Studies and Women’s Studies as academic fields and how these were the impetus for DWS. A discussion about the Deaf women’s experiences during different periods of American history is given in detail. A brief coverage of the history of Deaf Studies as a discipline shows how it inspired the pioneers to establish the DWS field. Gaps in curricula, resources, and corpus as they appeared at the time that DWS began are described. Finally, the article devotes substantial space to the experiences that the authors had in developing courses, its syllabi, and teaching about Deaf women. A number of current challenges and achievements point to a continued pressing strong need for DWS to gain strength through research and scholarship

Environmental Disparities in the Objectively and Longitudinally Measured Local Food Environments of Urban Older Adults

Background: Valid measures of local food environments are needed to quantify disparities in the availability of healthy foods and estimate the effect of built environments on health. Limited measures are available to describe the fluctuation of food retail environments over time, and how food environments are utilized by older adults. Purpose: This study measured neighborhood environments of older adults living in Brooklyn, NY, using an objective, prospective audit tool in order to document variations in the availability of food retailers and other neighborhood resources over a two-year period. Additionally, neighborhood utilization patterns, which may mitigate exposure to the built environment, were assessed using surveys of participating older adults. Methods: Older adults enrolled in the Cardiovascular Health of Seniors and the Built Environment study in New York City (NYC) between 2009-2011 completed surveys in person at baseline and two years later (n=1,318). Auditors documented food retailers located on NYC streets within 300-meters of each participant’s home, within six months of baseline surveys, and two years later. Results: Most participants walked to food stores, purchased food less than 0.5 mile from home, and consumed meals at home. Changes to food retail environments were observed by race and ethnicity, with decreases in bodegas (b= -1.28, standard error (SE) = 0.18) and liquor stores (b= -0.19, SE 0.05) in the buffer zones of white participants compared with that of black participants. Increases in supermarkets were observed in both white (b= 0.27, SE 0.07) and Latino buffer zones (b= 0.28, SE 0.08). Conclusions: Changes in food environments varied by areas where Black, White, and Hispanic participants lived. Understanding the variation of exposure to local food environments over time, and how the exposures may be mediated by behaviors, will lead to more precision in exposure assignment within this area of environmental and health science

Cisplatin and fluorouracil with or without panitumumab in patients with recurrent or metastatic squamous-cell carcinoma of the head and neck (SPECTRUM): an open-label phase 3 randomised trial

Background: Previous trials have shown that anti-EGFR monoclonal antibodies can improve clinical outcomes of patients with recurrent or metastatic squamous-cell carcinoma of the head and neck (SCCHN). We assessed the efficacy and safety of panitumumab combined with cisplatin and fluorouracil as first-line treatment for these patients. Methods: This open-label phase 3 randomised trial was done at 126 sites in 26 countries. Eligible patients were aged at least 18 years; had histologically or cytologically confi rmed SCCHN; had distant metastatic or locoregionally recurrent disease, or both, that was deemed to be incurable by surgery or radiotherapy; had an Eastern Cooperative Oncology Group performance status of 1 or less; and had adequate haematological, renal, hepatic, and cardiac function. Patients were randomly assigned according to a computer-generated randomisation sequence (1:1; stratifi ed by previous treatment, primary tumour site, and performance status) to one of two groups. Patients in both groups received up to six 3-week cycles of intravenous cisplatin (100 mg/m(2) on day 1 of each cycle) and fl uorouracil (1000 mg/m(2) on days 1-4 of each cycle); those in the experimental group also received intravenous panitumumab (9 mg/kg on day 1 of each cycle). Patients in the experimental group could choose to continue maintenance panitumumab every 3 weeks. The primary endpoint was overall survival and was analysed by intention to treat. In a prospectively defi ned retrospective analysis, we assessed tumour human papillomavirus (HPV) status as a potential predictive biomarker of outcomes with a validated p16-INK4A (henceforth, p16) immunohistochemical assay. Patients and investigators were aware of group assignment; study statisticians were masked until primary analysis; and the central laboratory assessing p16 status was masked to identifi cation of patients and treatment. This trial is registered with ClinicalTrials. gov, number NCT00460265. Findings: Between May 15, 2007, and March 10, 2009, we randomly assigned 657 patients: 327 to the panitumumab group and 330 to the control group. Median overall survival was 11.1 months (95% CI 9.8-12.2) in the panitumumab group and 9.0 months (8.1-11.2) in the control group (hazard ratio [HR] 0.873, 95% CI 0.729-1.046; p = 0.1403). Median progression-free survival was 5.8 months (95% CI 5.6-6.6) in the panitumumab group and 4.6 months (4.1-5.4) in the control group (HR 0.780, 95% CI 0.659-0.922; p = 0.0036). Several grade 3 or 4 adverse events were more frequent in the panitumumab group than in the control group: skin or eye toxicity (62 [19%] of 325 included in safety analyses vs six [2%] of 325), diarrhoea (15 [5%] vs four [1%]), hypomagnesaemia (40 [12%] vs 12 [4%]), hypokalaemia (33 [10%] vs 23 [7%]), and dehydration (16 [5%] vs seven [2%]). Treatment-related deaths occurred in 14 patients (4%) in the panitumumab group and eight (2%) in the control group. Five (2%) of the fatal adverse events in the panitumumab group were attributed to the experimental agent. We had appropriate samples to assess p16 status for 443 (67%) patients, of whom 99 (22%) were p16 positive. Median overall survival in patients with p16-negative tumours was longer in the panitumumab group than in the control group (11.7 months [95% CI 9.7-13.7] vs 8.6 months [6.9-11.1]; HR 0.73 [95% CI 0.58-0.93]; p = 0.0115), but this difference was not shown for p16-positive patients (11.0 months [7.3-12.9] vs 12.6 months [7.7-17.4]; 1.00 [0.62-1.61]; p = 0.998). In the control group, p16-positive patients had numerically, but not statistically, longer overall survival than did p16-negative patients (HR 0.70 [95% CI 0.47-1.04]). Interpretation: Although the addition of panitumumab to chemotherapy did not improve overall survival in an unselected population of patients with recurrent or metastatic SCCHN, it improved progression-free survival and had an acceptable toxicity profile. p16 status could be a prognostic and predictive marker in patients treated with panitumumab and chemotherapy. Prospective assessment will be necessary to validate our biomarker findings

Neighborhood Environment and Adiposity among Older Adults: the Cardiovascular Health of Seniors and the Built Environment Study

Background. Individual neighborhood factors are associated with obesity-related health behaviors and rates; however, there remains a paucity of information characterizing whole environments in these relationships and limited information on the effect for older adults. Methods. Adults, aged 60 or older living in New York City, were enrolled into the Cardiovascular Health of Seniors and the Built Environment between January 2009 and June 2011. Walking audits of all streets within 300-meter buffer zones around residential addresses were conducted resulting in the assessment of 34 different neighborhood features hypothesized to be associated with obesity through physical activity and diet. Outcomes included objective measures of body fat mass (FM), waist circumference (WC), and body mass index (BMI). Stratified linear regression models were used to calculate geographic differences in associations between neighborhood resources and adiposity by gender and age categories in areas where Black, White and Latino residents lived. Results. For women 60-69 years of age living in black areas, neighborhood features resulted in a higher FM than the average Brooklyn neighborhood (Difference (D) =2.15, 95% CI [1.15, 3.15]). Conversely, for women of the same age living in white and Latino areas, a lower prevalence of FM was observed: white areas: (D= -2.01, 95% CI [-3.62, -0.40]); Latino areas: (D= -1.43, 95% CI [-2.72, -0.14]). The direction of the effects remained similar for other age groups, although the estimates were less precise. Estimates of FM were inconsistent across age groups for men living in each of the areas. Other measurements of adiposity showed similar results. Conclusions. The composition of neighborhood features in white and Latino residential areas is protective of adiposity, whereas features located in black areas appear to place residents at greater risk

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a “roadmap” for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a “roadmap” for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH

Speech Communication

Contains table of contents for Part V, table of contents for Section 1, reports on six research projects and a list of publications.C.J. Lebel FellowshipDennis Klatt Memorial FundNational Institutes of Health Grant R01-DC00075National Institutes of Health Grant R01-DC01291National Institutes of Health Grant R01-DC01925National Institutes of Health Grant R01-DC02125National Institutes of Health Grant R01-DC02978National Institutes of Health Grant R01-DC03007National Institutes of Health Grant R29-DC02525National Institutes of Health Grant F32-DC00194National Institutes of Health Grant F32-DC00205National Institutes of Health Grant T32-DC00038National Science Foundation Grant IRI 89-05249National Science Foundation Grant IRI 93-14967National Science Foundation Grant INT 94-2114

High-throughput nanopore sequencing of Treponema pallidum tandem repeat genes arp and tp0470 reveals clade-specific patterns and recapitulates global whole genome phylogeny

Sequencing of most Treponema pallidum genomes excludes repeat regions in tp0470 and the tp0433 gene, encoding the acidic repeat protein (arp). As a first step to understanding the evolution and function of these genes and the proteins they encode, we developed a protocol to nanopore sequence tp0470 and arp genes from 212 clinical samples collected from ten countries on six continents. Both tp0470 and arp repeat structures recapitulate the whole genome phylogeny, with subclade-specific patterns emerging. The number of tp0470 repeats is on average appears to be higher in Nichols-like clade strains than in SS14-like clade strains. Consistent with previous studies, we found that 14-repeat arp sequences predominate across both major clades, but the combination and order of repeat type varies among subclades, with many arp sequence variants limited to a single subclade. Although strains that were closely related by whole genome sequencing frequently had the same arp repeat length, this was not always the case. Structural modeling of TP0470 suggested that the eight residue repeats form an extended α-helix, predicted to be periplasmic. Modeling of the ARP revealed a C-terminal sporulation-related repeat (SPOR) domain, predicted to bind denuded peptidoglycan, with repeat regions possibly incorporated into a highly charged β-sheet. Outside of the repeats, all TP0470 and ARP amino acid sequences were identical. Together, our data, along with functional considerations, suggests that both TP0470 and ARP proteins may be involved in T. pallidum cell envelope remodeling and homeostasis, with their highly plastic repeat regions playing as-yet-undetermined roles