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At least 19 recordsLinked to original sources
PubMed2025

Autism ableism seen through research abstract contents: A mixed-methods analysis of language in NIH-funded genetic and genomic autism research.

In recent years, genetic and genomic autism research has come under increasing scrutiny, moving to the center of debates about ableism, neurodiversity, autism acceptance, and the future of research and care. At the same time, both autism research and genetics and genomics research have, as fields, begun to reckon with the significance of the language researchers use in the course of their work and the harmful ideas that may thereby be reinforced. Although the language of research cannot be assumed to straightforwardly correspond to individual researchers' beliefs, the presence of widespread ableist language may indicate structural and institutionalized ableism, including ableist assumptions at the foundations of research. We conducted a mixed-methods analysis of 166 genetic and genomic autism research projects funded by the US National Institutes of Health, in order to understand the prevalence of potentially ableist discourse, language, and stigmatizing language about autistic people. We found that such discourse and language was ubiquitous across our sample, including a discourse of prevention. This study lends empirical evidence to current debates about language in autism research. Evaluating language can prompt researchers and institutions to reflect on how they conceptualize, design, discuss, and pursue their work.Lay abstractGenetic research about autism is controversial. Researchers are starting to think more carefully about the words they use to talk about autism and the way they do their research. Past research has found that researchers sometimes write about autism in ableist ways. This means that they write about autistic people as though they are less important than nonautistic people. We looked at the way genetics researchers have written about autism in the paperwork for their research. We found that they often write about autistic people in an ableist way. We think that researchers should think carefully about the way they write about autistic people, and how they plan and do their research.

Humans↗
PubMed2025

Underrepresented populations in genomic research: a qualitative study of researchers' perspectives.

BACKGROUND: The lack of diversity in genomic data limits researchers' ability to investigate the relationships between genetic profiles, disease manifestations, and responses to new therapies. As a result, innovations in treatment could have potentially harmful effects on a significant portion of the population due to incomplete or inaccurate genomic data. In addition, the lack of harmonization in the use of population descriptors in genomic studies raises both ethical and scientific concerns regarding which descriptors should be used to study and recruit underrepresented populations. Therefore, understanding the factors contributing to the lack of diversity in genomic research is an urgent scientific, clinical, and public health priority. This study aims to explore the social and contextual factors influencing the participation of underrepresented populations in genomic research, from the perspective of researchers in the field. METHODS: A total of 13 semi-structured interviews were conducted with researchers experienced in genomic research in Canada and fluent in either French or English. The interview transcripts were analyzed using thematic analysis. RESULTS: Researchers identified several factors contributing to the low participation of underrepresented populations in genomic research, with one key factor being the geographic distribution of research institutions and the disconnect between research efforts and the communities being studied. To address this issue, participants stressed the importance of moving away from colonial practices, such as conducting research on a community without consulting its members in the design phase. Furthermore, it was suggested that existing diversity, equity, and inclusion policies alone were insufficient to effectively address the challenge. Lastly, the study also highlighted a potential link between how study populations are categorized and the willingness of underrepresented groups to participate in genomic research. CONCLUSION: Although researchers are generally aware of the literature on the causes, consequences, and potential solutions for increasing participation, confusion remains regarding the use of population descriptors. Our findings highlight the need for improved education, greater consensus, and expanded dialogue within the genomic research community to promote the harmonization of population descriptors.

Humans↗
PubMed2026

Acceptability and Feasibility of an Educational Intervention to Improve Researcher-Participant Interactions in a Neonatal Intensive Care Unit Clinical Trial: Research Team Feedback on the BRIEF Intervention.

OBJECTIVE: Interactions with families are essential to successful recruitment conversations that promote informed decision-making about clinical research enrollment. However, there is little evidence about how to implement communication-oriented recruitment training among pediatric clinical research teams. Our objective was to evaluate the feasibility and acceptability of Better Research Interactions for Every Family (BRIEF), a multipart educational intervention to improve relationship-based conversations about clinical trial enrollment with families in the neonatal setting. STUDY DESIGN: We piloted BRIEF in partnership with a neonatal clinical research team. Research team members completed surveys following the BRIEF intervention's online module and the BRIEF group training session. They completed self-assessments after consent discussions before and after the BRIEF intervention, in which they rated their achievement of recruitment skills taught in BRIEF. Research team members also completed a final study interview to provide feedback on the intervention components, training content, and use of skills in practice. RESULTS: All nine research team members completed all components of BRIEF. Survey responses showed moderate to low satisfaction with previous recruitment training before BRIEF and high satisfaction with the BRIEF training. Self-assessments showed significant increases in reported partnership with bedside nursing (p = 0.02) and confirmation of family names (p = 0.05) after BRIEF training. Interviews provided further evidence of overall satisfaction with the BRIEF training, its content, and the skills learned, as well as opportunities for improvement, particularly in supporting challenging conversations. CONCLUSION: This pilot study demonstrated the feasibility and acceptability of the BRIEF intervention, as well as opportunities for improvement in future training. KEY POINTS: · It was feasible to implement the BRIEF researcher training in a single-site NICU trial.. · BRIEF training was acceptable to research team members.. · BRIEF training shows potential to improve relationship-based research communication..

Humans↗
PubMed2025

Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study.

BACKGROUND: Longitudinal cohort studies have traditionally relied on clinic-based recruitment models, which limit cohort diversity and the generalizability of research outcomes. Digital research platforms can be used to increase participant access, improve study engagement, streamline data collection, and increase data quality; however, the efficacy and sustainability of digitally enabled studies rely heavily on the design, implementation, and management of the digital platform being used. OBJECTIVE: We sought to design and build a secure, privacy-preserving, validated, participant-centric digital health research platform (DHRP) to recruit and enroll participants, collect multimodal data, and engage participants from diverse backgrounds in the National Institutes of Health's (NIH) All of Us Research Program (AOU). AOU is an ongoing national, multiyear study aimed to build a research cohort of 1 million participants that reflects the diversity of the United States, including minority, health-disparate, and other populations underrepresented in biomedical research (UBR). METHODS: We collaborated with community members, health care provider organizations (HPOs), and NIH leadership to design, build, and validate a secure, feature-rich digital platform to facilitate multisite, hybrid, and remote study participation and multimodal data collection in AOU. Participants were recruited by in-person, print, and online digital campaigns. Participants securely accessed the DHRP via web and mobile apps, either independently or with research staff support. The participant-facing tool facilitated electronic informed consent (eConsent), multisource data collection (eg, surveys, genomic results, wearables, and electronic health records [EHRs]), and ongoing participant engagement. We also built tools for research staff to conduct remote participant support, study workflow management, participant tracking, data analytics, data harmonization, and data management. RESULTS: We built a secure, participant-centric DHRP with engaging functionality used to recruit, engage, and collect data from 705,719 diverse participants throughout the United States. As of April 2024, 87% (n=613,976) of the participants enrolled via the platform were from UBR groups, including racial and ethnic minorities (n=282,429, 46%), rural dwelling individuals (n=49,118, 8%), those over the age of 65 years (n=190,333, 31%), and individuals with low socioeconomic status (n=122,795, 20%). CONCLUSIONS: We built a participant-centric digital platform with tools to enable engagement with individuals from different racial, ethnic, and socioeconomic backgrounds and other UBR groups. This DHRP demonstrated successful use among diverse participants. These findings could be used as best practices for the effective use of digital platforms to build and sustain cohorts of various study designs and increase engagement with diverse populations in health research.

Humans↗
PubMed1978

Dental research priorities and availability of research opportunities for dental students.

The American Student Dental Association surveyed 69 dental deans representing schools in the United States, Canada, and Puerto Rico to assess the priority of research and the role of dental students in research activity. Student interest, curricular requirements, potential funding, and opportunities available, as related to dental research, were topics included on the questionnaire. The results indicate that although the percentage of dental students seeking research involvement is small, opportunities and financial support for research are available in most dental schools as part of the regular curriculum.

Canada↗
PubMed1979

[26 years of research in pneumoconiosis in the field of British coal mines. Contribution of that research to the epidemiology of pulmonary disorders in miners].

Events leading to the start of the Pneumoconiosis Field Research in 1953 are reviewed. Research methods are outlined, progress is described, and the main results are summarised. Three medical surveys were conducted at approximately five-year intervals in 24 coal mines. A further two quinquennial surveys took place at 10 of them, thus completing 20 years' observations. Individual miners' exposures to dust have been measured throughout the periods of study and earlier exposures have been estimated. The dust exposure have been expressed as cumulative timeweighted mass concentrations of dust in the respirable range. Correlations have been demonstrated between this index of exposure and (a) risks of developing various degrees of simple pneumoconiosis, (b) the occurrence of chronic bronchitis symptoms, (c) level of breathing capacity, and (d) among miners with no pneumoconiosis, mortality attributed to respiratory diseases generally, chronic bronchitis and emphysema in particular, and to cancers of the digestive organs. Exposures to quartz amounting to less than about 10 per cent of mixed coal mine dust do not generally affect the probability of developing simple pneumoconiosis. But there is evidence that some miners may show unusual radiological changes over ten years when exposed to dust with a relatively high quartz content. Current work includes continuation of mortality studies and follow-up surveys of miners no longer working at the research collieries. The inter-disciplinary nature of the research team is emphasized and there are suggestions for further work on unresolved problems.

Coal Mining↗
PubMed1979

[Literature and schizophrenia. Research trends and research tasks].

Research on schizophrenia and on the psychopathology of creativity is increasingly absorbing and transforming insights from literature (Büchner, Celan, Kafka, Proust) and literary aesthetics. This development is discussed against the background of the history of psychiatric research. Regarding contemporary research trends, special emphasis is placed on communication theory as presented by the Palo Alto group (double bind theory), anti-psychiatry (Cooper, Laing), French structuralism (Foucault, Lacan), and on schizoanalysis (Deleuze and Guattari). Traditional concepts of mental health and illness are called into question.

History, 19th Century↗
PubMed1977

Research and development contracting at the National Institute of Dental Research.

Government contracting for biomedical research and development is a cooperative venture of high public visibility. It must be soundly conceived, openly instituted, and skillfully managed. Because of the cooperative nature of contract activities, it is important for the scientific community to understand the contract mechanism and the concepts upon which its use is based. Therefore, these concepts are described and how this mechanism serves as an aid in accomplishing the mission of the National Institute of Dental Research is discussed.

Dentistry↗
PubMed2026

Research updates in cystic fibrosis related diabetes: Understanding pathophysiology, expanding animal and human islet models, and advancing clinical and translational research.

In 2024-2025, the Cystic Fibrosis Foundation (US) and Cystic Fibrosis Trust (UK) hosted an International CFRD Consortium round-table webinar series for basic science, translational, and clinical researchers with the goal of sharpening mechanistic understanding of CFRD pathogenesis and prioritizing therapeutic development. This review summarizes the research priorities identified in the International CFRD Consortium, including (i) further investigation into the role of pancreatic fibrosis, vascular abnormalities, and α-cell dysfunction in the development of CFRD; (ii) the creation and refinement of novel animal and human cell- and tissue-based models to understand the complex interplay of exocrine and endocrine cells in the CF pancreas; (iii) development and validation of circulating and imaging biomarkers, together with dynamic glucose testing to explore β-cell function and kinetics in people with CF across the dysglycemia spectrum; and (iv) prospective clinical studies to guide CFRD treatment options and investigate the changing landscape of aging, increasing prevalence of obesity and diabetes and their complications in the era of cystic fibrosis transmembrane conductance regulator (CFTR) modulators. Collectively, these priorities aim to accelerate transition from mechanism to intervention and expand evidence-based care for people with CF at risk of, or living with, CFRD.

Humans↗
PubMedDate not supplied

Action research and evaluation: can research and practice be successfully combined?

Educative intervention with the young severely subnormal child and his family is envisaged as an example of 'action research' in which the dual roles of the practitioner-researcher and the client-subject are examined. A view of the effect of the interaction of these roles on the intervention and its evaluation is given, and conclusions drawn concerning the nature of evaluation appropriate in future projects of this kind.

Child Health Services↗
PubMed1978

Pitfalls and prospects in clinical research on antianxiety drugs: benzodiazepines and placebo--a research review.

The research methodology of 78 double-blind studies comparing benzodiazepines and placebo in treating neurotic anxiety is critically reviewed. Many faults are noted in areas of subject selection, assessment of clinical response, study design and data analysis. Although 56.4% of the studies reviewed had results demonstrating a significant difference in clinical response between benzodiazepines and placebo, the frequent methodologic difficulties and inconsistent results from study to study lead the authors to question the efficacy of these drugs as a treatment for anxiety. A need for better designed studies is discussed and some research methodologies proposed.

Anti-Anxiety Agents↗
PubMed1977

Development and application of basic research techniques in bladder cancer research.

The growth of transitional epithelial cells with different growth media and growth supports was examined. Sephadex G-10, Bio-Gel P-20, Bio-Glas-1000, DEAE-Sephadex A-50, DEAE-cellulose, CM-Sephadex C-50, acid-soluble collagen, and immobilized collagen fibers were used to enhance plating efficiency. Acid-soluble collagen layers optimally increased the plating efficiency of primary cultures of bladder carcinoma. Media alterations with serial combinations of fetal calf, newborn calf, calf, bovine, and bull serum with minimum essential medium, Roswell Park Memorial Institute Tissue Culture Medium 1640, Connaught Medical Research Laboratories Medium 1066, Medium 199, Grand Island Biological, National Cancer Tissue Culture 135, 1415, McCoy's 5A, and National Cancer Institute medium were established. No promotion of cell division was noted with any one of these basic medium formulations.

Animals↗
PubMed1979

Plasma lipid distributions in selected North American populations: the Lipid Research Clinics Program Prevalence Study. The Lipid Research Clinics Program Epidemiology Committee.

Cross-sectional age- and sex-specific plasma lipid distributions (means, medians and selected percentiles) are given for 48,431 white participants in visit 1 of the Lipid Research Clinics (LRC) Prevalence Study. This study consisted of two visits in which 10 LRCs screened participants selected from well-defined North American target populations that included a broad range of sociodemographic subgroups. These data confirm findings from earlier studies in developed countries, showing age-related differences in plasma lipid levels. However, for overall distributions, the LRC data showed slightly lower cholesterol and markedly higher triglyceride values than those previously reported for North America. Some variation in plasma lipid values was evident among the clinic populations. The large number of participants within most subgroups permitted a variety of analytic and comparative studies. For example, data from the large pediatric population revealed a drop in plasma cholesterol levels in adolescent males and females. Males aged 20--50 years had higher cholesterol levels than females in the same age group, and higher triglyceride levels between ages 20--70 years. Numbers were also sufficient for meaningful comparisons between lipid distributions of females who were taking sex hormones and those who were not: In females taking sex hormones, cholesterol and triglyceride levels were higher for subjects younger than 45 years, but slightly lower after age 45, than lipid levels in females not taking hormones.

Adolescent↗