A survey of attitudes toward clinical trials and genetic disclosure in autosomal dominant Alzheimer's disease

Alzheimer's Research and Therapy

Volumn 7, Issue 1, 2015, Pages

  Grill, Joshua D ^a,e   Bateman, Randall J ^b   Buckles, Virginia ^b   Oliver, Angela ^b   Morris, John C ^b   Masters, Colin L ^c   Klunk, William E ^d   Ringman, John M ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b WASHINGTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c UNIVERSITY OF MELBOURNE   (Australia)

^d UNIVERSITY OF PITTSBURGH SCHOOL OF MEDICINE   (United States)

^e UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ALZHEIMER DISEASE; ARTICLE; ATTITUDE TO HEALTH; AUTOSOMAL DOMINANT ALZHEIMER DISEASE; AUTOSOMAL DOMINANT DISORDER; CLINICAL TRIAL (TOPIC); GENE MUTATION; GENETIC SCREENING; HEALTH SURVEY; HUMAN; LONGITUDINAL STUDY; OUTCOME ASSESSMENT; PRIORITY JOURNAL; RISK ASSESSMENT;

EID: 84937552248     PISSN: None     EISSN: 17589193     Source Type: Journal    
DOI: 10.1186/s13195-015-0135-0     Document Type: Article

References (36)

1. Price JL, McKeel Jr DW, Buckles VD, et al. Neuropathology of nondemented aging: presumptive evidence for preclinical Alzheimer disease. Neurobiol Aging. 2009;30:1026-36.
2. Villemagne VL, Pike KE, Chetelat G, et al. Longitudinal assessment of Abeta and cognition in aging and Alzheimer disease. Ann Neurol. 2011;69:181-92.
3. Sperling RA, Aisen PS, Beckett LA, et al. Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7:280-92.
4. Bateman RJ, Xiong C, Benzinger TL, et al. Clinical and biomarker changes in dominantly inherited Alzheimer's disease. N Engl J Med. 2012;367:795-804.
5. Sperling RA, Jack Jr CR, Aisen PS. Testing the right target and right drug at the right stage. Sci Transl Med. 2011;3:111cm133.
6. Cummings JL, Doody R, Clark C. Disease-modifying therapies for Alzheimer disease: challenges to early intervention. Neurology. 2007;69:1622-34.
7. Bateman RJ, Aisen PS, De Strooper B, et al. Autosomal-dominant Alzheimer's disease: a review and proposal for the prevention of Alzheimer's disease. Alzheimers Res Ther. 2011;2:35.
8. Andrieu S, Coley N, Aisen P, et al. Methodological issues in primary prevention trials for neurodegenerative dementia. J Alzheimers Dis. 2009;16:235-70.
9. Thal LJ. Prevention of Alzheimer disease. Alzheimer Dis Assoc Disord. 2006;20:S97-9.
10. Campion D, Dumanchin C, Hannequin D, et al. Early-onset autosomal dominant Alzheimer disease: prevalence, genetic heterogeneity, and mutation spectrum. Am J Hum Genet. 1999;65:664-70.
11. Ringman JM. What the study of persons at risk for familial Alzheimer's disease can tell us about the earliest stages of the disorder: a review. J Geriatr Psychiatry Neurol. 2005;18:228-33.
12. Mullan M, Houlden H, Crawford F, et al. Age of onset in familial early onset Alzheimer's disease correlates with genetic aetiology. Am J Med Genet. 1993;48:129-30.
13. Bird TD, Levy-Lahad E, Poorkaj P, et al. Wide range in age of onset for chromosome 1-related familial Alzheimer's disease. Ann Neurol. 1996;40:932-6.
14. Ryman DC, Acosta-Baena N, Aisen PS, et al. Symptom onset in autosomal dominant Alzheimer disease: a systematic review and meta-analysis. Neurology. 2014;83:253-60.
15. Ringman JM, Younkin SG, Pratico D, et al. Biochemical markers in persons with preclinical familial Alzheimer disease. Neurology. 2008;71:85-92.
16. Moulder KL, Snider BJ, Mills SL, et al. Dominantly Inherited Alzheimer Network: facilitating research and clinical trials. Alzheimers Res Ther. 2013;5:48.
17. Ringman JM, Grill J, Rodriguez-Agudelo Y, et al. Commentary on "a roadmap for the prevention of dementia II: Leon Thal Symposium 2008". Prevention trials in persons at risk for dominantly inherited Alzheimer's disease: opportunities and challenges. Alzheimers Dement. 2009;5:166-71.
18. Steinbart EJ, Smith CO, Poorkaj P, et al. Impact of DNA testing for early-onset familial Alzheimer disease and frontotemporal dementia. Arch Neurol. 2001;58:1828-31.
19. Morris JC, Aisen PS, Bateman RJ, et al. Developing an international network for Alzheimer research: the Dominantly Inherited Alzheimer Network. Clin Investig. 2012;2:975-84.
20. Hooper M, Grill JD, Rodriguez-Agudelo Y, et al. The impact of the availability of prevention studies on the desire to undergo predictive testing in persons at risk for autosomal dominant Alzheimer's disease. Contemp Clin Trials. 2013;36:256-62.
21. Grill JD, Karlawish J. Addressing the challenges to successful recruitment and retention in Alzheimer's disease clinical trials. Alzheimers Res Ther. 2010;2:34.
22. Dominantly Inherited Alzheimer's Network Trials Unit. www.DIAN-TU.org. Accessed date 03/01/2015.
23. Mills SM, Mallmann J, Santacruz AM, et al. Preclinical trials in autosomal dominant AD: implementation of the DIAN-TU trial. Rev Neurol. 2013;169:737-43.
24. Bird TD. Risks and benefits of DNA testing for neurogenetic disorders. Semin Neurol. 1999;19:253-9.
25. Lennox A, Karlinsky H, Meschino W, et al. Molecular genetic predictive testing for Alzheimer's disease: deliberations and preliminary recommendations. Alzheimer Dis Assoc Disord. 1994;8:126-47.
26. Babul R, Adam S, Kremer B, et al. Attitudes toward direct predictive testing for the Huntington disease gene. Relevance for other adult-onset disorders. The Canadian Collaborative Group on Predictive Testing for Huntington Disease. JAMA. 1993;270:2321-5.
27. Bird TD, Bennett RL, Lipe HP. The consequences of testing for Huntington's disease. N Engl J Med. 1993;328:1046.
28. Marcheco-Teruel B, Fuentes-Smith E. Attitudes and knowledge about genetic testing before and after finding the disease-causing mutation among individuals at high risk for familial, early-onset Alzheimer's disease. Genet Test Mol Biomarkers. 2009;13:121-5.
29. Roberts JS, Ostergren J. Direct-to-consumer genetic testing and personal genomics services: a review of recent empirical studies. Curr Genet Med Rep. 2013;1:182-200.
30. Mouchawar J, Hensley-Alford S, Laurion S, et al. Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: a naturally-occurring experiment. Genet Med. 2005;7:191-7.
31. Dahodwala N, Connolly J, Farmer J, et al. Interest in predictive testing for Parkinson's disease: impact of neuroprotective therapy. Parkinsonism Relat Disord. 2007;13:495-9.
32. Hedera P. Ethical principles and pitfalls of genetic testing for dementia. J Geriatr Psychiatry Neurol. 2001;14:213-21.
33. Rosas HD, Doros G, Gevorkian S, et al. PRECREST: a phase II prevention and biomarker trial of creatine in at-risk Huntington disease. Neurology. 2014;82:850-7.
34. Kim SY. Karlawish J and Berkman BE. Neurology: Ethics of genetic and biomarker test disclosures in neurodegenerative disease prevention trials; 2015;84(14):1488.
35. The Belmont Report: ethical principles and guidelines for the protection of human subjects of research. US Government Printing Office. IRB. 1978.
36. Horng S, Grady C. Misunderstanding in clinical research: distinguishing therapeutic misconception, therapeutic misestimation, and therapeutic optimism. Irb. 2003;25:11-6.