Zobrazeno 1 - 10
of 17
pro vyhledávání: '"B. B. Biesecker"'
Publikováno v:
J Intellect Disabil Res
OBJECTIVES: The objective of this research was to understand parental proxy decision-making for drug trial participation for children with Fragile X Syndrome (FXS). Specifically, we aimed to capture preferences, motivations, influencing factors, and
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::8459bb82a41356cfa5cefb6a6dd40417
https://pubmed.ncbi.nlm.nih.gov/30747463
https://pubmed.ncbi.nlm.nih.gov/30747463
Autor:
B. B. Biesecker
Publikováno v:
JAMA: The Journal of the American Medical Association. 269:1970-1974
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::02f35fd41a4e8a4828fa8e64dd6c1d4d
https://doi.org/10.1001/jama.269.15.1970
https://doi.org/10.1001/jama.269.15.1970
Autor:
TURNER SYNDROME STUDY G.R.O.U.P. Bondy CA, Turner Sindrome Study Group: Turner Sindrome Consensus Study Group: Neus Baena, V. K. Bakalov, B. B. Biesecker, J. C. Carel, G. Conway, M. Davenport, C. Disteche, M. F. Karnis, J. A. Germak, C. H. Gravholt, J. Foodim, D. Gunther, O. Hovatta, A. M. Kappelgard, W. Kiess, K. Landin Wilhelmsen, A. Lin, B. Lippe, M. Loscalzo, K. Lynch, M. M. M. Mazzocco, E. McCauley, P. McDonough, S. M. P. F. de Muinck Keizer Schrama, R. W. Naeraa, C. Quigley, R. Rosenfield, D. Rosing, J. Ross, D. Roulot, K. Rubin, P. Saenger, P. Schmidt, M. Silberbach, V. Sybert, D. L. Van Dyke, A. Zinn, MAZZANTI, LAURA
Objectives: The objective of this work is to provide updated guidelines for the evaluation and treatment of girls and women with Turner syndrome (TS). Participants: The Turner Syndrome Consensus Study Group is a multidisciplinary panel of experts wit
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c975f3e5d31204ad3b3c737d05d8c3b0
http://hdl.handle.net/11585/124715
http://hdl.handle.net/11585/124715
Publikováno v:
Clinical genetics. 62(2)
As individuals with Marfan syndrome are increasingly diagnosed earlier in life and prior to life-threatening cardiovascular events, there is opportunity to study factors that influence their reproductive planning and quality of life. In this study of
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::223994d7ba9d7019b1d6a02aa64e194f
https://pubmed.ncbi.nlm.nih.gov/12220448
https://pubmed.ncbi.nlm.nih.gov/12220448
Autor:
B B, Biesecker
Publikováno v:
Clinical genetics. 60(5)
The goals of genetic counseling have differed over the past three decades. Two schools of thought are prominent in reviewing past literature. One upholds the goal of preventing birth defects and genetic disorders while the other promotes a goal of im
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::8e918c3b2afb34231917581462da9a01
https://pubmed.ncbi.nlm.nih.gov/11903329
https://pubmed.ncbi.nlm.nih.gov/11903329
Publikováno v:
Clinical genetics. 60(4)
We present data from an exploratory study of 174 adults with Marfan syndrome regarding their cognitive perceptions of the condition as postulated by the self-regulatory model (Leventhal H, Benyamini Y, Brownlee S et al. In: Petrie KI, Weinman JA, eds
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::84e91c79f0ed58a8c951b86384388617
https://pubmed.ncbi.nlm.nih.gov/11683773
https://pubmed.ncbi.nlm.nih.gov/11683773
Publikováno v:
Clinical genetics. 60(4)
We investigated the perceptions of and adherence to medication and physical activity guidelines in 174 adults with Marfan syndrome. Over 80% of those prescribed beta- and Ca2+-channel blockade reportedly adhere well to their medication regimen. The p
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::5ab3754bc1313bf2b833d37ec99b9280
https://pubmed.ncbi.nlm.nih.gov/11683774
https://pubmed.ncbi.nlm.nih.gov/11683774
Publikováno v:
American journal of medical genetics. 94(3)
Most studies of outcomes of genetic counseling have focused on client knowledge, reproductive plans and behavior, or satisfaction. Other measures of the "value" of genetic counseling are needed to guide research assessing the impact of genetic counse
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::1ae1d7057e45a1d9a1c718f9693071d8
https://pubmed.ncbi.nlm.nih.gov/10995504
https://pubmed.ncbi.nlm.nih.gov/10995504
Autor:
B B, Biesecker, N, Ishibe, D W, Hadley, T R, Giambarresi, R G, Kase, C, Lerman, J P, Struewing
Publikováno v:
American journal of medical genetics. 93(4)
Although BRCA1/2 testing has increasingly entered clinical practice, much is to be learned about the most effective ways to provide counseling to persons potentially interested in receiving test results. The purpose of this study was to identify fact
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::821556f58a6e9d5467b3e43af1a0e8a8
https://pubmed.ncbi.nlm.nih.gov/10946349
https://pubmed.ncbi.nlm.nih.gov/10946349
Autor:
B B, Biesecker
Publikováno v:
Cancer nursing. 20(4)
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::87bc384fc073215b65acf957e9d4145b
https://pubmed.ncbi.nlm.nih.gov/9265816
https://pubmed.ncbi.nlm.nih.gov/9265816