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

Grill, JD and Bateman, RJ and Buckles, V and Oliver, A and Morris, JC and Masters, CL and Klunk, WE and Ringman, JM (2015) A survey of attitudes toward clinical trials and genetic disclosure in autosomal dominant Alzheimer's disease. Alzheimer's Research and Therapy, 7 (1).

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© 2015 Grill et al. Introduction: Because of its genetic underpinnings and consistent age of onset within families, autosomal dominant Alzheimer's disease (ADAD) provides a unique opportunity to conduct clinical trials of investigational agents as preventative or symptom-delaying treatments. The design of such trials may be complicated by low rates of genetic testing and disclosure among persons at risk of inheriting disease-causing mutations. Methods: To better understand the attitudes toward genetic testing and clinical trials of persons at risk for ADAD, we surveyed participants in the Dominantly Inherited Alzheimer's Network (DIAN), a multisite longitudinal study of clinical and biomarker outcomes in ADAD that does not require learning genetic status to participate. Results: Eighty participants completed a brief anonymous survey by mail or on-line; 40 % reported knowing if they carried a gene mutation, 15 % did not know but expressed a desire to learn their genetic status, and 45 % did not know and did not desire to know their genetic status. Among participants who knew or wished to know their genetic status, 86 % were interested in participating in a clinical trial. Seventy-two percent of participants who did not wish to learn their genetic status reported that they would change their mind, if learning that they carried a mutation gave them the opportunity to participate in a clinical trial. Nearly all participants responded that they would be interested if an open-label extension were offered. Conclusions: These results suggest that the availability of clinical trials to prevent ADAD can affect persons' desire to undergo genetic testing and that consideration can be given to performing studies in which such testing is required.


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Item Type: Article
Status: Published
CreatorsEmailPitt UsernameORCID
Grill, JD
Bateman, RJ
Buckles, V
Oliver, A
Morris, JC
Masters, CL
Klunk, WEwek1@pitt.eduWEK1
Ringman, JM
Date: 22 July 2015
Date Type: Publication
Journal or Publication Title: Alzheimer's Research and Therapy
Volume: 7
Number: 1
DOI or Unique Handle: 10.1186/s13195-015-0135-0
Schools and Programs: School of Medicine > Neurology
Refereed: Yes
Date Deposited: 17 Aug 2016 13:44
Last Modified: 26 Jan 2019 10:55


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