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526 results on '"Sandberg, David E."'

105. Mental Health of Transgender and Gender Nonconforming Youth Compared With Their Peers

Author

Becerra-Culqui, Tracy A., primary, Liu, Yuan, additional, Nash, Rebecca, additional, Cromwell, Lee, additional, Flanders, W. Dana, additional, Getahun, Darios, additional, Giammattei, Shawn V., additional, Hunkeler, Enid M., additional, Lash, Timothy L., additional, Millman, Andrea, additional, Quinn, Virginia P., additional, Robinson, Brandi, additional, Roblin, Douglas, additional, Sandberg, David E., additional, Silverberg, Michael J., additional, Tangpricha, Vin, additional, and Goodman, Michael, additional

Published
2018
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106. Erratum: Global disorders of sex development update since 2006: perceptions, approach and care (Hormone Research in Paediatrics (2016) 85 (158-180) DOI: 10.1159/000442975)

Author

Lee, Peter A., Nordenström, Anna, Houk, Christopher P., Ahmed, S. Faisal, Auchus, Richard, Baratz, Arlene, Dalke, Katharine Baratz, Liao, Lih-Mei, Lin-Su, Karen, Looijenga, Leendert H. J., Mazur, Tom, Meyer-Bahlburg, Heino F. L., Mouriquand, Pierre, Quigley, Charmian A., Sandberg, David E., Vilain, Eric, Witchel, Selma, Ansermet, Francois, Baker, Linda, Belgorovsky, Alicia V., Baskin, Larry, Berenbaum, Sheri A., Bouvattier, Claire, Braga, Luis, Caldamone, Anthony, Callens, Nina, Charmandari, Evangelia, Chigiti, John M., Cohen-Kettenis, Peggy T., Conte, Felix, Cools, Martine, Conway, Gerard S., Davis, Georgiann, Delimata, Natalie, Drop, Stenvert L. S., Duranteau, Lise, Ediati, Annastasia, Fluck, Christa, Garland, Jameson, Gay, Claire-Lise, el Ghoneimi, Alaa, Gillam, Lynn, Gorduza, Daniela, di Grazia, Massimo, Green, Janet, Guerra, Gil, Hensle, Terry, Hines, Melissa, Hoebeke, Piet, Horikawa, Reiko, Kaefer, Martin, Kaggwa, Julius Kaganzi, Karkazis, Katrina, Kolon, Tom, Kalfa, Nicolas, Lee, Mary M., Lesma, Arianna, Loke, Kah Yin, Manzoni, Gianantonio, Marrocco, Giacinto, Merlini, Emilio, Moore, Jim, Muscarella, Miriam B., Nordenskjold, Agneta, Salle, Joao L. Pippi, Poppas, Dix Phillip, Ransley, Philip, Roen, Katrina, Rivarola, Marco, Rey, Rodolfo, Rigamonti, Waifro, Rink, Richard, Romao, Rodrigo, Rossi, Wilma, Sann, Leon, Schober, Justine M., Sibai, Hisham, Smith, Arlene, Srinivasan, Shubha, Sudai, Maayan, Sultan, Sajid, Vogiatzi, Maria, Walker, Jan, Warne, Gary, Wiesemann, Claudia, Wisniewski, Amy, and Zieselman, Kimberly

Abstract

In the appendix of the recent publication by Lee et al. entitled 'Global disorders of sex development update since 2006: perceptions, approach and care' [Horm Res Paediatr 2016;85:158–180, DOI: 10.1159/000442975], Massimo Di Grazia, Psychologist, is incorrectly mentioned to be from Cosenga, Italy. The correct city is Trieste, Italy.

Published
2016
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110. Unexpected ethical dilemmas in sex assignment in 46,XY DSD due to 5‐alpha reductase type 2 deficiency

Author

Byers, Heather M., primary, Mohnach, Lauren H., additional, Fechner, Patricia Y., additional, Chen, Ming, additional, Thomas, Inas H., additional, Ramsdell, Linda A., additional, Shnorhavorian, Margarett, additional, McCauley, Elizabeth A., additional, Amies Oelschlager, Anne‐Marie E., additional, Park, John M., additional, Sandberg, David E., additional, Adam, Margaret P., additional, and Keegan, Catherine E., additional

Published
2017
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112. Proceedings from the Turner Resource Network symposium: The crossroads of health care research and health care delivery

Author

Massachusetts Institute of Technology. Department of Biology, Page, David C, Backeljauw, Philippe F., Bondy, Carolyn, Chernausek, Steven D., Cernich, Joseph T., Cole, David A., Fasciano, Laura P., Foodim, Joan, Hawley, Scott, Hong, David S., Knickmeyer, Rebecca C., Kruszka, Paul, Lin, Angela E., Lippe, Barbara M., Lorigan, Gary A., Maslen, Cheryl L., Mauras, Nelly, Pemberton, Victoria L., Prakash, Siddharth K., Quigley, Charmian A., Ranallo, Kelly C., Reiss, Allan L., Sandberg, David E., Scurlock, Cindy, Silberbach, Michael, Massachusetts Institute of Technology. Department of Biology, Page, David C, Backeljauw, Philippe F., Bondy, Carolyn, Chernausek, Steven D., Cernich, Joseph T., Cole, David A., Fasciano, Laura P., Foodim, Joan, Hawley, Scott, Hong, David S., Knickmeyer, Rebecca C., Kruszka, Paul, Lin, Angela E., Lippe, Barbara M., Lorigan, Gary A., Maslen, Cheryl L., Mauras, Nelly, Pemberton, Victoria L., Prakash, Siddharth K., Quigley, Charmian A., Ranallo, Kelly C., Reiss, Allan L., Sandberg, David E., Scurlock, Cindy, and Silberbach, Michael

Abstract

Turner syndrome, a congenital condition that affects ∼1/2,500 births, results from absence or structural alteration of the second sex chromosome. There has been substantial effort by numerous clinical and genetic research groups to delineate the clinical, pathophysiological, cytogenetic, and molecular features of this multisystem condition. Questions about the molecular-genetic and biological basis of many of the clinical features remain unanswered, and health care providers and families seek improved care for affected individuals. The inaugural “Turner Resource Network (TRN) Symposium” brought together individuals with Turner syndrome and their families, advocacy group leaders, clinicians, basic scientists, physician-scientists, trainees and other stakeholders with interest in the well-being of individuals and families living with the condition. The goal of this symposium was to establish a structure for a TRN that will be a patient-powered organization involving those living with Turner syndrome, their families, clinicians, and scientists. The TRN will identify basic and clinical questions that might be answered with registries, clinical trials, or through bench research to promote and advocate for best practices and improved care for individuals with Turner syndrome. The symposium concluded with the consensus that two rationales justify the creation of a TRN: 1. inadequate attention has been paid to the health and psychosocial issues facing girls and women who live with Turner syndrome; 2. investigations into the susceptibility to common disorders such as cardiovascular or autoimmune diseases caused by sex chromosome deficiencies will increase understanding of disease susceptibilities in the general population., National Science Foundation (U.S.) (AGS-0944121), United States. Department of Energy (DE-FG02-94ER61937), United States. Environmental Protection Agency (XA-83600001-1)

Published
2017

118. Psychosocial Screening in Disorders/Differences of Sex Development: Psychometric Evaluation of the Psychosocial Assessment Tool.

Author

Ernst, Michelle M., Gardner, Melissa, Mara, Constance A., Délot, Emmanuèle C., Fechner, Patricia Y., Fox, Michelle, Rutter, Meilan M., Speiser, Phyllis W., Vilain, Eric, Weidler, Erica M., and Sandberg, David E.

Subjects
SEX differentiation disorders, PSYCHOLOGICAL distress, PSYCHOMETRICS
Abstract

>bold<>italic/italic<>/bold< Utilization of a psychosocial screener to identify families affected by a disorder/difference of sex development (DSD) and at risk for adjustment challenges may facilitate efficient use of team resources to optimize care. The Psychosocial Assessment Tool (PAT) has been used in other pediatric conditions. The current study explored the reliability and validity of the PAT (modified for use within the DSD population; PAT-DSD). >bold<>italic/italic<>/bold< Participants were 197 families enrolled in the DSD-Translational Research Network (DSD-TRN) who completed a PAT-DSD during a DSD clinic visit. Psychosocial data were extracted from the DSD-TRN clinical registry. Internal reliability of the PAT-DSD was tested using the Kuder-Richardson-20 coefficient. Validity was examined by exploring the correlation of the PAT-DSD with other measures of caregiver distress and child emotional-behavioral functioning. >bold<>italic/italic<>/bold< One-third of families demonstrated psychosocial risk (27.9% "Targeted" and 6.1% "Clinical" level of risk). Internal reliability of the PAT-DSD Total score was high (α = 0.86); 4 of 8 subscales met acceptable internal reliability. A priori predicted relationships between the PAT-DSD and other psychosocial measures were supported. The PAT-DSD Total score related to measures of caregiver distress (>italic/italic< = 0.40, >italic/italic< < 0.001) and to both caregiver-reported and patient self-reported behavioral problems (>italic/italic< = 0.61, >italic/italic< < 0.00; >italic/italic< = 0.37, >italic/italic< < 0.05). >bold<>italic/italic<>/bold< This study provides evidence for the reliability and validity of the PAT-DSD. Given variability in the internal reliability across subscales, this measure is best used to screen for overall family risk, rather than to assess specific psychosocial concerns. [ABSTRACT FROM AUTHOR]

Published
2018
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119. Should short children who are not deficient in growth hormone be treated?

Author

Sandberg, David E.

Subjects
Somatotropin -- Health aspects -- Physiological aspects, Stature, Short -- Physiological aspects -- Health aspects, Health, Physiological aspects, Health aspects
Abstract

Summary points * Growth hormone therapy is increasingly being used to treat youths who are not deficient in growth hormone * The psychosocial difficulties associated with being short seem to [...]

Published
2000

122. Development of Health-Related Quality of Life Instruments for Young Children With Disorders of Sex Development (DSD) and Their Parents.

Author

Alpern, Adrianne N., Gardner, Melissa, Kogan, Barry, Sandberg, David E., and Quittner, Alexandra L.

Subjects
QUALITY of life, SEX differentiation disorders, PSYCHOMETRICS, INTERSEXUALITY, DECISION making, MENTAL health, FOCUS groups, HEALTH status indicators, INTERVIEWING, PSYCHOLOGY of parents, RESEARCH evaluation, SELF-evaluation, PSYCHOLOGY
Abstract

Objective: Research in disorders of sex development (DSD) is hindered by a lack of standardized measures sensitive to the experiences of affected children and families. We developed and evaluated parent proxy (children 2-6 years) and parent self-report (children ≤6 years) health-related quality of life (HRQoL) instruments for DSD.Methods: Items were derived from focus groups and open-ended interviews. Clarity and comprehensiveness were assessed with cognitive interviews. Psychometric properties were examined in a field survey of 94 families.Results: Measures demonstrated adequate to good psychometrics, including internal consistency, test-retest reliability, convergent validity, and ability to detect known-group differences. Parents reported greatest stress on Early Experiences , Surgery , and Future Concerns scales.Conclusions: These instruments identify patients' and families' needs, monitor health and quality of life status, and can evaluate clinical interventions. Findings highlight the need for improved psychosocial support during the diagnostic period, better parent-provider communication, and shared decision-making. HRQoL measures are needed for older youth. [ABSTRACT FROM AUTHOR]

Published
2017
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131. Assessment of Health-Related Quality of Life and Patient Satisfaction in Children and Adolescents with Growth Hormone Deficiency or Idiopathic Short Stature - Part 1 : A Critical Evaluation of Available Tools

Author

Bruett, Anna Levke, Sandberg, David E., Chaplin, John, Wollmann, Hartmut, Noeker, Meinolf, Koltowska-Häggström, Maria, Bullinger, Monika, Bruett, Anna Levke, Sandberg, David E., Chaplin, John, Wollmann, Hartmut, Noeker, Meinolf, Koltowska-Häggström, Maria, and Bullinger, Monika

Abstract

The concept of health-related quality of life (HrQoL) reflects the subjective perception of health and includes aspects of well-being and functioning in physical, emotional, mental and social life domains. Nowadays, HrQoL has become a relevant treatment outcome from epidemiological and clinical perspectives and is also broadly employed in health economic analyses. To assess HrQoL generic as well as condition-specific instruments are used. The former are applicable to a wide range of health conditions and aim at measuring HrQoL across different conditions. The latter focus on capturing the impact of a specific disease. Although HrQoL research in adults is now well-advanced, there are still open questions regarding how to assess HrQoL in pediatric conditions, such as short stature. Eight generic (one chronic-generic) and seven condition-specific (one treatment-specific) instruments used in HrQoL research in short stature of youth are described. Additionally, this mini review identifies a need for further research and indicates potential directions.

Published
2009
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