Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.
Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers.
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DOI：
10.1002/trc2.12213
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发表时间：
2021
期刊：
影响因子：
--
通讯作者：
Advisory Group on Risk Evidence Education for Dementia (AGREED)
中科院分区：
文献类型：
--
作者：
Roberts JS;Ferber R;Blacker D;Rumbaugh M;Grill JD;Advisory Group on Risk Evidence Education for Dementia (AGREED)
This study describes practices for disclosing individual research results to participants in Alzheimer's disease research. An online survey of clinical core leaders at National Institutes of Health‐funded Alzheimer's Disease Research Centers in the United States (response rate: 30/31, 97%) examined return of results practices across nine different types of research results. Most centers had returned consensus research diagnoses (83%) and neuropsychological test results (73%), with fewer having shared amyloid positron emission tomography (43%), tau imaging (10%), or apolipoprotein E (APOE) genotype (7%) results. Centers reported having disclosed a mean of 3.1 types of results (standard deviation = 2.1; range 0–8). The most commonly cited reason for disclosure was to inform participants’ medical decision‐making (88%). Disclosure involved multiple professionals and modalities, with neurologists (87%) and in‐person visits (85%) most commonplace. Centers varied widely as to whether and how they disclosed research results. Diagnostic and cognitive test results were more commonly returned than genetic or biomarker results.
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DOI：
10.1097/gim.0b013e31821d69b8
发表时间：
2011-06
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Goldman JS;Hahn SE;Catania JW;LaRusse-Eckert S;Butson MB;Rumbaugh M;Strecker MN;Roberts JS;Burke W;Mayeux R;Bird T;American College of Medical Genetics and the National Society of Genetic Counselors
通讯作者：
American College of Medical Genetics and the National Society of Genetic Counselors
影响因子：
29
作者：
Gooblar, Jonathan;Roe, Catherine M.;Morris, John C.
通讯作者：
Morris, John C.
影响因子：
2.7
作者：
Su, Xiaowei W.;Simmons, Zachary
通讯作者：
Simmons, Zachary
影响因子：
8.8
作者：
Christensen, Kurt D.;Uhlmann, Wendy R.;Green, Robert C.
通讯作者：
Green, Robert C.
影响因子：
158.5
作者：
Green, Robert C.;Roberts, J. Scott;Farrer, Lindsay A.
通讯作者：
Farrer, Lindsay A.