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      Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research

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          Abstract

          The purpose of this review is to create a set of provisional criteria for Institutional Review Boards (IRBs) to refer to when assessing the ethical orientation of transgender health research proposals. We began by searching for literature on this topic using databases and the reference lists of key articles, resulting in a preliminary set of criteria. We then collaborated to develop the following nine guidelines: (1) Whenever possible, research should be grounded, from inception to dissemination, in a meaningful collaboration with community stakeholders; (2) language and framing of transgender health research should be non-stigmatizing; (3) research should be disseminated back to the community; (4) the diversity of the transgender and gender diverse (TGGD) community should be accurately reflected and sensitively reflected; (5) informed consent must be meaningful, without coercion or undue influence; (6) the protection of participant confidentiality should be paramount; (7) alternative consent procedures should be considered for TGGD minors; (8) research should align with current professional standards that refute conversion, reorientation, or reparative therapy; and (9) IRBs should guard against the temptation to avoid, limit, or delay research on this subject.

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          Most cited references 85

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          Long-Term Follow-Up of Transsexual Persons Undergoing Sex Reassignment Surgery: Cohort Study in Sweden

          Context The treatment for transsexualism is sex reassignment, including hormonal treatment and surgery aimed at making the person's body as congruent with the opposite sex as possible. There is a dearth of long term, follow-up studies after sex reassignment. Objective To estimate mortality, morbidity, and criminal rate after surgical sex reassignment of transsexual persons. Design A population-based matched cohort study. Setting Sweden, 1973-2003. Participants All 324 sex-reassigned persons (191 male-to-females, 133 female-to-males) in Sweden, 1973–2003. Random population controls (10∶1) were matched by birth year and birth sex or reassigned (final) sex, respectively. Main Outcome Measures Hazard ratios (HR) with 95% confidence intervals (CI) for mortality and psychiatric morbidity were obtained with Cox regression models, which were adjusted for immigrant status and psychiatric morbidity prior to sex reassignment (adjusted HR [aHR]). Results The overall mortality for sex-reassigned persons was higher during follow-up (aHR 2.8; 95% CI 1.8–4.3) than for controls of the same birth sex, particularly death from suicide (aHR 19.1; 95% CI 5.8–62.9). Sex-reassigned persons also had an increased risk for suicide attempts (aHR 4.9; 95% CI 2.9–8.5) and psychiatric inpatient care (aHR 2.8; 95% CI 2.0–3.9). Comparisons with controls matched on reassigned sex yielded similar results. Female-to-males, but not male-to-females, had a higher risk for criminal convictions than their respective birth sex controls. Conclusions Persons with transsexualism, after sex reassignment, have considerably higher risks for mortality, suicidal behaviour, and psychiatric morbidity than the general population. Our findings suggest that sex reassignment, although alleviating gender dysphoria, may not suffice as treatment for transsexualism, and should inspire improved psychiatric and somatic care after sex reassignment for this patient group.
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            Concordance between administrative claims and registry data for identifying metastasis to the bone: an exploratory analysis in prostate cancer

            Background To assess concordance between Medicare claims and Surveillance, Epidemiology, and End Results (SEER) reports of incident BM among prostate cancer (PCa) patients. The prevalence and consequences of bone metastases (BM) have been examined across tumor sites using healthcare claims data however the reliability of these claims-based BM measures has not been investigated. Methods This retrospective cohort study utilized linked registry and claims (SEER-Medicare) data on men diagnosed with incident stage IV M1 PCa between 2005 and 2007. The SEER-based measure of incident BM was cross-tabulated with three separate Medicare claims approaches to assess concordance. Sensitivity, specificity and positive predictive value (PPV) were calculated to assess the concordance between registry- and claims-based measures. Results Based on 2,708 PCa patients in SEER-Medicare, there is low to moderate concordance between the SEER- and claims-based measures of incident BM. Across the three approaches, sensitivity ranged from 0.48 (0.456 – 0.504) to 0.598 (0.574 - 0.621), specificity ranged from 0.538 (0.507 - 0.569) to 0.620 (0.590 - 0.650) and PPV ranged from 0.679 (0.651 - 0.705) to 0.690 (0.665 - 0.715). A comparison of utilization patterns between SEER-based and claims-based measures suggested avenues for improving sensitivity. Conclusion Claims-based measures using BM ICD 9 coding may be insufficient to identify patients with incident BM diagnosis and should be validated against chart data to maximize their potential for population-based analyses.
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              Desisting and persisting gender dysphoria after childhood: a qualitative follow-up study.

              The aim of this qualitative study was to obtain a better understanding of the developmental trajectories of persistence and desistence of childhood gender dysphoria and the psychosexual outcome of gender dysphoric children. Twenty five adolescents (M age 15.88, range 14-18), diagnosed with a Gender Identity Disorder (DSM-IV or DSM-IV-TR) in childhood, participated in this study. Data were collected by means of biographical interviews. Adolescents with persisting gender dysphoria (persisters) and those in whom the gender dysphoria remitted (desisters) indicated that they considered the period between 10 and 13 years of age to be crucial. They reported that in this period they became increasingly aware of the persistence or desistence of their childhood gender dysphoria. Both persisters and desisters stated that the changes in their social environment, the anticipated and actual feminization or masculinization of their bodies, and the first experiences of falling in love and sexual attraction had influenced their gender related interests and behaviour, feelings of gender discomfort and gender identification. Although, both persisters and desisters reported a desire to be the other gender during childhood years, the underlying motives of their desire seemed to be different.
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                Author and article information

                Journal
                Transgend Health
                Transgend Health
                trgh
                Transgender Health
                Mary Ann Liebert, Inc. (140 Huguenot Street, 3rd FloorNew Rochelle, NY 10801USA )
                2380-193X
                01 October 2017
                2017
                01 October 2017
                : 2
                : 1
                : 165-175
                Affiliations
                [ 1 ]Faculty of Health Professions, School of Social Work, Dalhousie University, Halifax, Nova Scotia, Canada.
                [ 2 ]Department of Sociology, University of Warwick, Coventry, United Kingdom.
                [ 3 ]Department of Psychology, University of Waikato , Hamilton, New Zealand.
                [ 4 ]Callen-Lorde Community Health Center , New York, New York.
                [ 5 ]New York University School of Medicine , New York, New York.
                [ 6 ]Center of Excellence for Transgender Health, University of California San Francisco , San Francisco, California.
                [ 7 ]IRGT, A Global Network of Trans Women and HIV , Oakland, California.
                [ 8 ]Solidarity and Action Against HIV Infection in India , New Delhi, India.
                [ 9 ]Central Toronto Youth Services , Toronto, Canada.
                Author notes
                [†]

                Current address: School of Sociology and Social Policy, University of Leeds, Leeds, United Kingdom.

                [ * ]Address correspondence to: Noah Adams, MSW, E-mail: noah@ 123456noahjadams.com
                Article
                10.1089/trgh.2017.0012
                10.1089/trgh.2017.0012
                5665092
                © Noah Adams et al. 2017; Published by Mary Ann Liebert, Inc.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                Page count
                References: 114, Pages: 11
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