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Research priorities of people living with Turner syndrome
dc.contributor.authorSandberg, David E.
dc.contributor.authorSinger, Dianne
dc.contributor.authorBugajski, Benjamin
dc.contributor.authorGebremariam, Achamyeleh
dc.contributor.authorScerbak, Teresa
dc.contributor.authorDooley Maley, Kathleen L.
dc.contributor.authorScurlock, Cindy
dc.contributor.authorCulin, Denise
dc.contributor.authorEder, Sally
dc.contributor.authorSilberbach, Michael
dc.date.accessioned2019-04-02T18:11:18Z
dc.date.available2020-05-01T18:03:25Zen
dc.date.issued2019-03
dc.identifier.citationSandberg, 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.issn1552-4868
dc.identifier.issn1552-4876
dc.identifier.urihttps://hdl.handle.net/2027.42/148393
dc.publisherJohn Wiley & Sons, Inc.
dc.subject.otherpatient‐centered
dc.subject.otherresearch priorities
dc.subject.othersurvey
dc.subject.otherTurner syndrome
dc.titleResearch priorities of people living with Turner syndrome
dc.typeArticle
dc.rights.robotsIndexNoFollow
dc.subject.hlbsecondlevelHuman Genetics
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/148393/1/ajmgc31676.pdf
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/148393/2/ajmgc31676_am.pdf
dc.identifier.doi10.1002/ajmg.c.31676
dc.identifier.sourceAmerican Journal of Medical Genetics Part C: Seminars in Medical Genetics
dc.identifier.citedreferenceDe 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
dc.identifier.citedreferenceForsythe, L. P., Szydlowski, V., Murad, M. H., Ip, S., Wang, Z., Elraiyah, T. A., … Hickam, D. H. ( 2014 ). A systematic review of approaches for engaging patients for research on rare diseases. Journal of General Internal Medicine, 29 ( 3 ), 788 – 800. https://doi.org/10.1007/s11606-014-2895-9
dc.identifier.citedreferenceUnited States Census Bureau. ( 2017 ). Quick facts. Retrieved from https://www.census.gov/quickfacts/fact/table/US/PST045217.
dc.identifier.citedreferenceTurner Syndrome Research Registry. ( 2018 ). Retrieved from https://www.turnersyndrome.org/research-registry.
dc.identifier.citedreferenceNational 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.citedreferenceGravholt, 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.citedreferenceFrank, 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.citedreferenceAchenbach, 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.citedreferenceAchenbach, 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.citedreferenceCommittee 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.owningcollnameInterdisciplinary and Peer-Reviewed


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