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The PhenX Toolkit (https://www.phenxtoolkit.org/) is an online catalog of recommended measurement protocols to facilitate cross-study analyses for biomedical research. An expert review panel (ERP) reviewed and updated the PhenX Toolkit Speech and Hearing domain to improve the precision and consistency of speech, language, and hearing disorder phenotypes. A three-member ERP convened in August 2018 to review the measurement protocols in the PhenX Speech and Hearing domain. Aided by three additional experts in voice assessment, vertigo, and stuttering, the ERP updated the 28 protocols to reflect the latest science and technology. ERP recommendations include six new protocols, five updated protocols (from the same source), and one retired protocol. New additions include two voice-related, three hearing-related, and two speech-related protocols. Additions reflect new phone/tablet applications for hearing and language, and clinical evaluations of voice. "Language" was added to the domain name, which is now "Speech, Language, and Hearing," to represent language-related protocols. These protocols can facilitate the assessment of speech, language, and hearing in clinical and population research. Common data elements (i.e., use of the same variables across studies) used by geneticists, otolaryngologists, audiologists, speech-language pathologists, and in other disciplines can lead to cross-study data integration and increased statistical power when studies are combined.

Models of special education that are diagnosis orientated mean that individuals with ASD are~seen as ‘different’ from their non-disabled peers. These views reproduce school practices in which those labelled disabled are likely to be treated as problematic rather than ‘coming from a different place’. This article explores the narrative of one Year 9 student with ASD and his understanding of his identity as a learner and his sense of belonging and friendships at school through a double hermeneutic approach. In it, the observations of the researcher and the professional relationship they both have, as well as the collaboration and engagement with the student at the time, are intertwined. The narrative reveals something of the continuous amounts of resilience and determination that students with ASD must draw on so to participate successfully in school life. The article suggests that mindfulness on the part of teachers is needed in daily interactions to fully support agency and well-being in this student group.

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Coordinated specialty care (CSC) is a promising multielement treatment for the care of individuals experiencing the onset of schizophrenia. The community mental health block grant program has increased federal support for CSC programs. In order to maximize the number of sites capable of science-to-service or service-to-science translation, the National Institute of Mental Health funded a supplement to the PhenX toolkit consisting of measures for early psychosis. The early psychosis working group included translational research and clinical services panels. The clinical services panel was charged with identifying low-burden and psychometrically sound measures for use in routine clinical settings. The 19 new clinical measures complement existing measures already in the toolkit. Measures cover a range of domains, including symptoms, social and occupational functioning, well-being, medication adherence and side effects, physical activity, and shared decision making and person-centered care. Several challenges are also discussed. The review process underscored the challenges facing nonacademic sites in collecting even low-burden assessments.

The goals of PhenX (consensus measures for Phenotypes and eXposures) are to promote the use of standard measurement protocols and to help investigators identify opportunities for collaborative research and cross‐study analysis, thus increasing the impact of individual studies. The PhenX Toolkit (https://www.phenxtoolkit.org/) offers high‐quality, well‐established measurement protocols to assess phenotypes and exposures in studies with human participants. The Toolkit contains protocols representing 29 research domains and 6 specialty collections of protocols that add depth to the Toolkit in specific research areas (e.g., COVID‐19, Social Determinants of Health [SDoH], Blood Sciences Research [BSR], Mental Health Research [MHR], Tobacco Regulatory Research [TRR], and Substance Abuse and Addiction [SAA]). Protocols are recommended for inclusion in the PhenX Toolkit by Working Groups of domain experts using a consensus process that includes input from the scientific community. For each PhenX protocol, the Toolkit provides a detailed description, the rationale for inclusion, and supporting documentation. Users can browse protocols in the Toolkit, search the Toolkit using keywords, or use Browse Protocols Tree to identify protocols of interest. The PhenX Toolkit provides data dictionaries compatible with the database of Genotypes and Phenotypes (dbGaP), Research Electronic Data Capture (REDCap) data submission compatibility, and data collection worksheets to help investigators incorporate PhenX protocols into their study design. The PhenX Toolkit provides resources to help users identify published studies that used PhenX protocols. © 2021 The Authors. Current Protocols published by Wiley Periodicals LLC. Basic Protocol: Using the PhenX Toolkit to support or extend study design

The PhenX (consensus measures for Phenotypes and eXposures) Toolkit (https://www.phenxtoolkit.org/) is a publicly available, web‐based catalog of recommended, well‐established measurement protocols of phenotypes and exposures. The goal of PhenX is to facilitate the use of standard measures, enhance data interoperability, and promote collaborative and translational research. PhenX is driven by the scientific community and historically has depended on working groups of experts to recommend measures for release in the PhenX Toolkit. The urgent need for recommended, standard measures for COVID‐19 research triggered the development of a “rapid release” process for releasing new content in the PhenX Toolkit. Initially, PhenX collaborated with the National Institutes of Health (NIH) Office of Behavioral and Social Sciences Research, the National Human Genome Research Institute, and the NIH Disaster Research Response (DR2) program to create a library of COVID‐19 measurement protocols. With additional support from NIH, PhenX adapted crowdsourcing techniques to accelerate prioritization and recommendation of protocols for release in the PhenX Toolkit. Prioritized COVID‐19‐specific protocols were used to anchor and define specialty collections of protocols that were subject to review and approval by the PhenX Steering Committee. In addition to the COVID‐19‐specific protocols, the specialty collections include existing, well‐established PhenX protocols, use of which will further enhance data interoperability and cross‐study analysis. The COVID‐19 specialty collections are Behaviors and Risks; Ethnicity, Race and Demographics; History, Treatment and Outcomes; Information Resources; Psychosocial and Mental Health; and Socioeconomic. The development and usage of PhenX COVID‐19 specialty collections are described in this article. © 2021 The Authors. Basic Protocol: Selecting COVID‐19 protocols

This article explores the possible influence of past practices of institutionalization on discussions involving groups of beginning teachers who are exploring how to include all disabled children in regular classes in New Zealand. As part of a principal lecture about institutionalization, social norms, inclusion and disability rights, beginning teachers were asked to provide feedback about their knowledge of a large local institution – Tokanui Hospital. Two thirds of those responding, many aged under 25 years, reported no knowledge about the institution. However, one third indicated varying amounts of information about Tokanui and those who lived and worked in it. Comments made by the participants indicate that the legacy of institutional practice may influence at least some beginning teachers’ beliefs about inclusion in ways that need more consideration. Some narratives about institutionalisation are generally available but many stories about this period remain hidden. More concerted efforts to find and disseminate these stories are needed.

Introduction The PhenX Toolkit, an online resource of well-established measures of phenotypes and exposures, now has 16 new measures recommended for assessing rare genetic conditions. Materials and Methods These measures and their protocols were selected by a working group of domain experts with input from the scientific community. Results The measures cover life stages from birth through adulthood, and include clinical scales, characterization of rare genetic conditions, bioassays, and questionnaires. Most are broadly applicable to rare genetic conditions, e.g., family history, growth charts, bone age, and body proportions. Some protocols, e.g., sweat chloride test, target specific conditions. Discussion The rare genetic condition measures complement the existing measures in the PhenX Toolkit that cover anthropometrics, demographics, mental health, and reproductive history. They are directed at research pertaining to common and complex diseases. PhenX measures are publicly available and are recommended to help standardize assessments across a range of biomedical study designs. To facilitate incorporation of measures into human subjects’ research, the Toolkit offers data collection worksheets, and compatible data dictionaries. Conclusion Widespread use of standard, PhenX measures in clinical, translational and epidemiological research will enable more uniform cross-study comparisons and increase statistical power with the potential for enhancing scientific discovery.

This chapter focuses on the impact of processes of institutionalisation on the lives of people with learning/ intellectual disabilities in twentieth century New Zealand. At the beginning of the twentieth century the country had a burgeoning asylum system, an 1899 immigration act prohibiting ‘idiot persons’, a growing eugenics movement and social policy which sought the confinement of those regarded as difficult or deficient in some way. New Zealand’s Mental Defectives Act of 1911 preceded the British Mental Deficiency Act by two years. An anti-institutionalisation movement began early in post-war New Zealand and by the end of the century there had been a paradigm shift in ideas about how and where people labelled intellectually disabled should live. While problems and challenges remain, and the reform movement goes on, the success of the deinstitutionalization movement should not be underestimated.

Have you ever made a purchase based on a food label? Everyone gives food labels a cursory glance, but for the many consumers who wish to make purchasing decisions that reflect their personal and social values, food labels are critical. How do you decipher the myriad of new symbols, logos, certifi­cation claims, and sometimes meaningless informa­tion presented in today’s marketplace? How do you know which labels contain statements that are not regulated by governmental agencies? Can you differentiate third-party certifications from private company claims? In this commentary, we categorize and review a broad array of new label varieties, claims, certifications, and regulations. We then describe a new online, interactive resource for con­sumers to help them improve their understanding of food labels. Finally, we inventory additional teaching tools and resources that may provide educators with other food label curricula for consumers. See the press release for this article.

Background Single birth cohort studies have been the basis for many discoveries about early life risk factors for childhood asthma but are limited in scope by sample size and characteristics of the local environment and population. The Children’s Respiratory and Environmental Workgroup (CREW) was established to integrate multiple established asthma birth cohorts and to investigate asthma phenotypes and associated causal pathways (endotypes), focusing on how they are influenced by interactions between genetics, lifestyle, and environmental exposures during the prenatal period and early childhood. Methods and results CREW is funded by the NIH Environmental influences on Child Health Outcomes (ECHO) program, and consists of 12 individual cohorts and three additional scientific centers. The CREW study population is diverse in terms of race, ethnicity, geographical distribution, and year of recruitment. We hypothesize that there are phenotypes in childhood asthma that differ based on clinical characteristics and underlying molecular mechanisms. Furthermore, we propose that asthma endotypes and their defining biomarkers can be identified based on personal and early life environmental risk factors. CREW has three phases: 1) to pool and harmonize existing data from each cohort, 2) to collect new data using standardized procedures, and 3) to enroll new families during the prenatal period to supplement and enrich extant data and enable unified systems approaches for identifying asthma phenotypes and endotypes. Conclusions The overall goal of CREW program is to develop a better understanding of how early life environmental exposures and host factors interact to promote the development of specific asthma endotypes.

International audience; Sickle cell disease (SCD) is a debilitating single gene disorder caused by a single point mutation that results in physical deformation (i.e. sickling) of erythrocytes at reduced oxygen tensions. Up to 75% of SCD in newborns world-wide occurs in sub-Saharan Africa, where neonatal and childhood mortality from sickle cell related complications is high. While SCD research across the globe is tackling the disease on multiple fronts, advances have yet to significantly impact on the health and quality of life of SCD patients, due to lack of coordination of these disparate efforts. Ensuring data across studies is directly comparable through standardization is a necessary step towards realizing this goal. Such a standardization requires the development and implementation of a disease-specific ontology for SCD that is applicable globally. Ontology development is best achieved by bringing together experts in the domain to contribute their knowledge.The SCD community and H3ABioNet members joined forces at a recent SCD Ontology workshop to develop an ontology covering aspects of SCD under the classes: phenotype, diagnostics, therapeutics, quality of life, disease modifiers and disease stage. The aim of the workshop was for participants to contribute their expertise to development of the structure and contents of the SCD ontology. Here we describe the proceedings of the Sickle Cell Disease Ontology Workshop held in Cape Town South Africa in February 2016 and its outcomes. The objective of the workshop was to bring together experts in SCD from around the world to contribute their expertise to the development of various aspects of the SCD ontology.

In 2004 an intervention known as the Ashley Treatment (AT) was sought on behalf of Ashley X, a girl with severe developmental disabilities. A discursive interpretive framework is used to investigate use of the AT in the case of Charley Hooper in New Zealand in 2009. This investigation found that use of the AT is intimately bound up in ideas about worthiness of life related to the ability to act as an autonomous agent within social structures. Questions this case raises about ethical decision-making and future physical and social requirements for profoundly disabled young people in the future are posed.

Learning to value difference and diversity is a central goal of Initial Teacher Education (ITE) professional practice programmes in New Zealand. Yet the authors have continued to struggle to work with their ITE students to move them as a group towards such valuing in both theory and practice. In this article events that lead up to the changes initiated in an ITE inclusive education module in response to tensions arising during tutorial sessions in this paper in three previous years are outlined. A new pedagogical approach consisting of changes to curriculum material, the format of discussions and the tutorial environment itself is introduced. Four examples from participants’ discussions are discursively analysed, uncovering key teaching moments-of-transformation possibilities inherent in the talk. What is revealed is that less confrontational, more productive conversations became possible through the changes initiated. Theorisation of the authors’ experiences of the changes is then provided, drawing on po...

Standard measures and common data elements for sickle cell disease (SCD) will improve the data quality and comparability necessary for cross-study analyses and the development of guidelines that support effective treatments and interventions. In 2014, the National Institutes of Health, National Heart, Lung, and Blood Institute (NHLBI) funded an Administrative Supplement to the PhenX Toolkit (consensus measures for Phenotypes and eXposures; https://www.phenxtoolkit.org/) to identify common measures to promote data comparability across SCD research. An 11-member Sickle Cell Disease Research and Scientific Panel provided guidance to the project, establishing a core collection of SCD-related measures and defining the scope of 2 specialty collections: (1) cardiovascular, pulmonary, and renal complications, and (2) neurology, quality-of-life, and health services. For each specialty collection, a working group of SCD experts selected high-priority measures using a consensus process that included scientific community input. The SCD measures were released into the Toolkit in August 2015. The 25 measures included in the core collection are recommended for use by all NHLBI-funded investigators performing human-subject SCD research. The 10 neurology, quality-of-life, and health services measures and 14 cardiovascular, pulmonary, and renal measures are recommended for use within these specialized research areas. For SCD and other researchers, PhenX measures will promote collaborations with clinicians and patients, facilitate cross-study analysis, accelerate translational research, and lead to greater understanding of SCD phenotypes and epigenetics. For clinicians, using PhenX measures will help elucidate the etiology, progression, and treatment of SCD, leading to improved patient care and quality of life.