Research priorities of people living with Turner syndrome
dc.contributor.author | Sandberg, David E. | |
dc.contributor.author | Singer, Dianne | |
dc.contributor.author | Bugajski, Benjamin | |
dc.contributor.author | Gebremariam, Achamyeleh | |
dc.contributor.author | Scerbak, Teresa | |
dc.contributor.author | Dooley Maley, Kathleen L. | |
dc.contributor.author | Scurlock, Cindy | |
dc.contributor.author | Culin, Denise | |
dc.contributor.author | Eder, Sally | |
dc.contributor.author | Silberbach, Michael | |
dc.date.accessioned | 2019-04-02T18:11:18Z | |
dc.date.available | 2020-05-01T18:03:25Z | en |
dc.date.issued | 2019-03 | |
dc.identifier.citation | Sandberg, David E.; Singer, Dianne; Bugajski, Benjamin; Gebremariam, Achamyeleh; Scerbak, Teresa; Dooley Maley, Kathleen L.; Scurlock, Cindy; Culin, Denise; Eder, Sally; Silberbach, Michael (2019). "Research priorities of people living with Turner syndrome." American Journal of Medical Genetics Part C: Seminars in Medical Genetics 181(1): 43-51. | |
dc.identifier.issn | 1552-4868 | |
dc.identifier.issn | 1552-4876 | |
dc.identifier.uri | https://hdl.handle.net/2027.42/148393 | |
dc.publisher | John Wiley & Sons, Inc. | |
dc.subject.other | patient‐centered | |
dc.subject.other | research priorities | |
dc.subject.other | survey | |
dc.subject.other | Turner syndrome | |
dc.title | Research priorities of people living with Turner syndrome | |
dc.type | Article | |
dc.rights.robots | IndexNoFollow | |
dc.subject.hlbsecondlevel | Human Genetics | |
dc.subject.hlbtoplevel | Health Sciences | |
dc.description.peerreviewed | Peer Reviewed | |
dc.description.bitstreamurl | https://deepblue.lib.umich.edu/bitstream/2027.42/148393/1/ajmgc31676.pdf | |
dc.description.bitstreamurl | https://deepblue.lib.umich.edu/bitstream/2027.42/148393/2/ajmgc31676_am.pdf | |
dc.identifier.doi | 10.1002/ajmg.c.31676 | |
dc.identifier.source | American Journal of Medical Genetics Part C: Seminars in Medical Genetics | |
dc.identifier.citedreference | De Los Reyes, A. ( 2013 ). Strategic objectives for improving understanding of informant discrepancies in developmental psychopathology research. Development and Psychopathology, 25 ( 3 ), 669 – 682. https://doi.org/10.1017/S0954579413000096 | |
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dc.identifier.citedreference | United States Census Bureau. ( 2017 ). Quick facts. Retrieved from https://www.census.gov/quickfacts/fact/table/US/PST045217. | |
dc.identifier.citedreference | Turner Syndrome Research Registry. ( 2018 ). Retrieved from https://www.turnersyndrome.org/research-registry. | |
dc.identifier.citedreference | National Health Service. ( 2012 ). Liberating the NHS: No decision about me, without me—Government response to the consultation. (Gateway reference 18444). London. Retrieved from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/216980/Liberating‐the‐NHS‐No‐decision‐about‐me‐without‐me‐Government‐response.pdf. | |
dc.identifier.citedreference | Gravholt, C. H., Andersen, N. H., Conway, G. S., Dekkers, O. M., Geffner, M. E., Klein, K. O., … Backeljauw, P. F. ( 2017 ). Clinical practice guidelines for the care of girls and women with turner syndrome: Proceedings from the 2016 Cincinnati international turner syndrome meeting. European Journal of Endocrinology, 177 ( 3 ), G1 – G70. https://doi.org/10.1530/eje-17-0430 | |
dc.identifier.citedreference | Frank, L., Forsythe, L., Ellis, L., Schrandt, S., Sheridan, S., Gerson, J., … Daugherty, S. ( 2015 ). Conceptual and practical foundations of patient engagement in research at the patient‐centered outcomes research institute. Quality of Life Research, 24, 1 – 9. https://doi.org/10.1007/s11136-014-0893-3 | |
dc.identifier.citedreference | Achenbach, T. M. ( 2006 ). As others see us: Clinical and research implications of cross‐informant correlations for psychopathology. Current Directions in Psychological Science, 15 ( 2 ), 94 – 98. https://doi.org/10.1111/j.0963-7214.2006.00414.x | |
dc.identifier.citedreference | Achenbach, T. M., Krukowski, R. A., Dumenci, L., & Ivanova, M. Y. ( 2005 ). Assessment of adult psychopathology: Meta‐analyses and implications of cross‐informant correlations. Psychological Bulletin, 131 ( 3 ), 361 – 382. https://doi.org/10.1037/0033-2909.131.3.361 | |
dc.identifier.citedreference | Committee on Quality of Health Care in America, & Institute of Medicine. ( 2001 ). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: The National Academies Press. | |
dc.owningcollname | Interdisciplinary and Peer-Reviewed |
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