title: A survey of attitudes toward clinical trials and genetic disclosure in autosomal dominant Alzheimer's disease.
abstract: BACKGROUND
  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.
authors.affiliation: 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.
authors.forename: Joshua D
authors.initials: JD
authors.lastname: Grill
authors.affiliation: Department of Neurology, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8111, St. Louis, MO 63110 USA.
authors.forename: Randall J
authors.initials: RJ
authors.lastname: Bateman
authors.affiliation: Department of Neurology, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8111, St. Louis, MO 63110 USA.
authors.forename: Virginia
authors.initials: V
authors.lastname: Buckles
authors.affiliation: Department of Neurology, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8111, St. Louis, MO 63110 USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Oliver
authors.affiliation: Department of Neurology, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8111, St. Louis, MO 63110 USA.
authors.forename: John C
authors.initials: JC
authors.lastname: Morris
authors.affiliation: Mental Health Research Institute, University of Melbourne, Level 5, Kenneth Myer Building, 30 Royal Parade, Parkville, Victoria 3010 Australia.
authors.forename: Colin L
authors.initials: CL
authors.lastname: Masters
authors.affiliation: Department of Neurology, University of Pittsburgh, Room 1422 WPIC, 3811 O'Hara Street, Pittsburgh, PA 15213 USA.
authors.forename: William E
authors.initials: WE
authors.lastname: Klunk
authors.affiliation: 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.
authors.forename: John M
authors.initials: JM
authors.lastname: Ringman