Alzheimer's Family Research

NCT00878059 | Completed

• 1 other identifier: AD R01
• Study Type: observational
• Target: 165
• Locations: 1 country
• Sites: 1

Brief Summary

This is a research study about how family members make research participation decisions for a relative with Alzheimer's or a related dementia. The purpose of this study is to learn more about how proxies (the family member who makes decisions for that relative), would think through decisions about whether to enroll their relative in studies for not-yet-approved medications for Alzheimer's Disease. The long-term goal of the study is to improve the way researchers inform families about clinical research studies and opportunities for participation. This study is being sponsored by the National Institute on Aging. Study participants will be interviewed by a research staff member about research enrollment decisions for their relative. A number of standardized questionnaires will be administered. There is only one visit required. The interview lasts about three hours. The investigators will try to make it as convenient as possible for your schedule. This is a non-intervention study. UCSF CHR # H58055-31168-02 v.1 Date: 012709

Conditions

Decision Making

Study Arms (1)

Proxies

A family member-caregiver (the medical decision-maker) for someone with Alzheimer's Disease. Must be the person who would be able to make decisions for someone with Alzheimer's disease about being in medical research.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Subjects will be adult men and women who, under California law (AB2328), would be legally eligible to serve as proxy decision makers for Alzheimer's Disease patients for research. These will be spouses or adult children of people with Alzheimer's Disease.

You may qualify if:

• A family member-caregiver (the medical decision-maker) for someone with Alzheimer's Disease
• Able to be interviewed in person in or around the San Francisco Bay Area
• Able to read and understand English

Sponsors & Collaborators

• University of California, San Francisco: lead
• National Institute on Aging (NIA): collaborator

Study Sites (1)

UCSF Langley Porter Institute, or at participant's home

San Francisco, California, 94143, United States

Location

Study Officials

• Laura B Dunn, MD

  University of California, San Francisco

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: March 16, 2009
• First Posted: April 8, 2009
• Study Start: July 1, 2008
• Primary Completion: December 1, 2011
• Study Completion: December 1, 2011
• Last Updated: October 16, 2013

Record last verified: 2013-10

Locations

US (1)