106 research outputs found

    Seriously Injured Urban Black Men’s Perceptions of Clinical Research Participation

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    Purpose: Black men are uniquely vulnerable in American society and our health care system: they bear a disproportionate burden of injury, yet are underrepresented in clinical research. This study aimed to explore the reasons why urban Black men with serious injuries chose to participate in clinical research and their concerns about research participation. Methods: This qualitative study was conducted within the context of a larger study focused on psychological effects of serious injury in urban Black men; 83 Black men with serious injuries were recruited while hospitalized in an urban trauma center. Informed consent was obtained. Semi-structured interviews were conducted in participants’ homes three months after discharge from the hospital and were audiotaped, transcribed, and de-identified. Thematic content analysis was used to identify themes about perceptions of participating in clinical research. Results: The mean age of our sample was 38.2 years, and the mean injury severity score was 10.7 (SD 9.6). The majority (53.2 %) of injuries was due to interpersonal violence, and 47 % were due to unintentional mechanisms. Eight reasons for research participation emerged from the data: human connection, altruism/community, self-improvement, compensation, gaining knowledge, curiosity/interest, low risk, and reciprocity. Conclusions: A major finding was that injured urban Black men participated in clinical research for the opportunity for human and therapeutic connection. Despite some expressions of mistrust, participants were willing to participate for altruistic reasons rooted in community priorities, and as part of their recovery process post-injury

    Seriously Injured Urban Black Men’s Perceptions of Clinical Research Participation

    Get PDF
    Purpose: Black men are uniquely vulnerable in American society and our health care system: they bear a disproportionate burden of injury, yet are underrepresented in clinical research. This study aimed to explore the reasons why urban Black men with serious injuries chose to participate in clinical research and their concerns about research participation. Methods: This qualitative study was conducted within the context of a larger study focused on psychological effects of serious injury in urban Black men; 83 Black men with serious injuries were recruited while hospitalized in an urban trauma center. Informed consent was obtained. Semi-structured interviews were conducted in participants’ homes three months after discharge from the hospital and were audiotaped, transcribed, and de-identified. Thematic content analysis was used to identify themes about perceptions of participating in clinical research. Results: The mean age of our sample was 38.2 years, and the mean injury severity score was 10.7 (SD 9.6). The majority (53.2 %) of injuries was due to interpersonal violence, and 47 % were due to unintentional mechanisms. Eight reasons for research participation emerged from the data: human connection, altruism/community, self-improvement, compensation, gaining knowledge, curiosity/interest, low risk, and reciprocity. Conclusions: A major finding was that injured urban Black men participated in clinical research for the opportunity for human and therapeutic connection. Despite some expressions of mistrust, participants were willing to participate for altruistic reasons rooted in community priorities, and as part of their recovery process post-injury

    New Services for Families in the DC Superior Court

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    Until recently, because of concerns about safety and parties’ abilities to make good decisions in cases with a history of high intimate partner violence or abuse (IPV/A), in the District of Columbia’s Superior Court such cases were screened out of mediation and sent back to the family court. But two big program additions — videoconferencing and shuttle mediation — have allowed parties in these cases to consider mediation. The Multi-Door Dispute Resolution Division of the DC Superior Court (Multi-Door) implemented this change after several years of preparation: its administrators added safety measures, provided in-depth training for staff and mediators, and consulted with experts to design a research study to compare videoconference, shuttle mediation, and the prior practice of returning these cases to court

    Women Scholars, Integration, and the Marianist Tradition: Learning from our Culture and Ourselves

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    In the fall of 1997, a group of junior tenure-track women faculty in the Department of Teacher Education at the University of Dayton decided to meet regularly in order to support each other’s scholarly endeavors in the process of achieving promotion and tenure. The group of subsequently became known as the Writing-Writers’ Support Group (WWSG). In 2000, the group conducted a self-study of its group process to determine how the formation of women’s WWSG fit with the mission and characteristics of a Marianist university. The results suggest that, although each of the characteristics could be identified in the group processes, the group best identified with the Marianist mandate to educate in family spirit. Each member of the group considered the possible reasons for this outcome

    Women Scholars, Integration, and the Marianist Tradition: Learning From Our Culture and Ourselves

    Get PDF
    In the fall of 1997, a group of junior tenure-track women faculty in the Department of Teacher Education at the University of Dayton decided to meet regularly in order to support each others’ scholarly endeavors in the process of achieving promotion and tenure. The group of subsequently became known as the Writing ”“Writers’ Support Group (WWSG). In 2000, the group conducted a self-study of its group process to determine how the formation of women’s WWSG fit with the mission and characteristics of a Marianist university. The results suggest that, although each of the characteristics could be identified in the group processes, the group best identified with the Marianist mandate to educate in family spirit. Each member of the group considered the possible reasons for this outcome

    The phenotype of floating-harbor syndrome:clinical characterization of 52 individuals with mutations in exon 34 of SRCAP

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    Background\ud Floating-Harbor syndrome (FHS) is a rare condition characterized by short stature, delays in expressive language, and a distinctive facial appearance. Recently, heterozygous truncating mutations in SRCAP were determined to be disease-causing. With the availability of a DNA based confirmatory test, we set forth to define the clinical features of this syndrome.\ud \ud Methods and results\ud Clinical information on fifty-two individuals with SRCAP mutations was collected using standardized questionnaires. Twenty-four males and twenty-eight females were studied with ages ranging from 2 to 52 years. The facial phenotype and expressive language impairments were defining features within the group. Height measurements were typically between minus two and minus four standard deviations, with occipitofrontal circumferences usually within the average range. Thirty-three of the subjects (63%) had at least one major anomaly requiring medical intervention. We did not observe any specific phenotype-genotype correlations.\ud \ud Conclusions\ud This large cohort of individuals with molecularly confirmed FHS has allowed us to better delineate the clinical features of this rare but classic genetic syndrome, thereby facilitating the development of management protocols.The authors would like to thank the families for their cooperation and permission to publish these findings. SdM would like to thank Barto Otten. Funding was provided by the Government of Canada through Genome Canada, the Canadian Institutes of Health Research (CIHR) and the Ontario Genomics Institute (OGI-049), by Genome QuĂ©bec and Genome British Columbia, and the Manton Center for Orphan Disease Research at Children’s Hospital Boston. KMB is supported by a Clinical Investigatorship Award from the CIHR Institute of Genetics. AD is supported by NIH grant K23HD073351. BBAdV and HGB were financially supported by the AnEUploidy project (LSHG-CT-2006-37627). This work was selected for study by the FORGE Canada Steering Committee, which consists of K. Boycott (University of Ottawa), J. Friedman (University of British Columbia), J. Michaud (University of Montreal), F. Bernier (University of Calgary), M. Brudno (University of Toronto), B. Fernandez (Memorial University), B. Knoppers (McGill University), M. Samuels (UniversitĂ© de MontrĂ©al), and S. Scherer (University of Toronto). We thank the Galliera Genetic Bank - “Telethon Genetic Biobank Network” supported by Italian Telethon grants (project no. GTB07001) for providing us with specimens

    Guidance from an NIH Workshop on Designing, Implementing, and Reporting Clinical Studies of Soy Interventions1–4

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    The NIH sponsored a scientific workshop, “Soy Protein/Isoflavone Research: Challenges in Designing and Evaluating Intervention Studies,” July 28–29, 2009. The workshop goal was to provide guidance for the next generation of soy protein/isoflavone human research. Session topics included population exposure to soy; the variability of the human response to soy; product composition; methods, tools, and resources available to estimate exposure and protocol adherence; and analytical methods to assess soy in foods and supplements and analytes in biologic fluids and other tissues. The intent of the workshop was to address the quality of soy studies, not the efficacy or safety of soy. Prior NIH workshops and an evidence-based review questioned the quality of data from human soy studies. If clinical studies are pursued, investigators need to ensure that the experimental designs are optimal and the studies properly executed. The workshop participants identified methodological issues that may confound study results and interpretation. Scientifically sound and useful options for dealing with these issues were discussed. The resulting guidance is presented in this document with a brief rationale. The guidance is specific to soy clinical research and does not address nonsoy-related factors that should also be considered in designing and reporting clinical studies. This guidance may be used by investigators, journal editors, study sponsors, and protocol reviewers for a variety of purposes, including designing and implementing trials, reporting results, and interpreting published epidemiological and clinical studies
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