Format

Send to

Choose Destination
Alzheimers Res Ther. 2015 Jul 22;7(1):50. doi: 10.1186/s13195-015-0135-0. eCollection 2015.

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

Author information

1
Mary S. Easton Center for Alzheimer's Disease Research, Department of Neurology, University of California, 10911 Weyburn Ave, Ste 200, Los Angeles, CA 90095 USA ; Present address: Department of Psychiatry and Human Behavior and UCI Institute of Memory Impairments and Neurological Disorders, University of California, 3206 Biological Sciences III, Irvine, CA 92697-4545 USA.
2
Department of Neurology, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8111, St. Louis, MO 63110 USA.
3
Mental Health Research Institute, University of Melbourne, Level 5, Kenneth Myer Building, 30 Royal Parade, Parkville, Victoria 3010 Australia.
4
Department of Neurology, University of Pittsburgh, Room 1422 WPIC, 3811 O'Hara Street, Pittsburgh, PA 15213 USA.
5
Mary S. Easton Center for Alzheimer's Disease Research, Department of Neurology, University of California, 10911 Weyburn Ave, Ste 200, Los Angeles, CA 90095 USA.

Abstract

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.

Supplemental Content

Full text links

Icon for BioMed Central Icon for PubMed Central
Loading ...
Support Center