Memory Aid for Informed Consent in Alzheimer's Research

NCT ID: NCT00105612

Last Updated: 2009-12-29

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

110 participants

Study Classification

INTERVENTIONAL

Study Start Date

2004-09-30

Study Completion Date

2007-03-31

Brief Summary

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The purpose of this trial is to test whether a memory and organizational aid in the form of a document that summarizes and simplifies a study's key points can improve the decision-making abilities and competency of mild to early moderate Alzheimer's disease (AD) patients.

Detailed Description

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Studies of mild to moderate Alzheimer's disease (AD) patients reveal substantial variation in their ability to participate in an informed consent process. No published data show techniques that help an AD patient to participate in an informed consent. This research will address this issue by performing a randomized trial to test whether a memory and organizational aid can improve the decision-making abilities and competency of AD patients.

This study will recruit 80 patients with mild to early moderate AD, and 30 non-demented elderly persons. The informed consent protocol for a hypothetical early-phase drug trial will be administered by a trained interviewer in the patient's home. The AD patients will be randomized to receive either the standard informed consent process or the intervention of the standard informed consent process plus the memory and organizational aid. All non-demented elderly individuals will receive the standard informed consent process. The interviewer will administer the protocol to participants and ask questions that will assess participant capacity to understand, appreciate, reason, and make a choice concerning enrollment in the hypothetical study.

Conditions

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Alzheimer's Disease Aging

Keywords

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Informed Consent Memory Aid

Study Design

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Allocation Method

RANDOMIZED

Interventions

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Memory and Organizational Aid

Intervention Type DEVICE

Standard Informed Consent Process

The informed consent protocol for a hypothetical early-phase drug trial will be administered by a trained interviewer in the patient's home

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Live within one hour drive of the University of Pennsylvania's Memory Disorders Clinic
* Education equivalent to 6th grade level
* Corrected visual acuity of at least 20/70
* Speak English
* Diagnosed with possible or probable AD, or non-demented
* MMSE (Mini Mental State Exam) \>= 18
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institute on Aging (NIA)

NIH

Sponsor Role lead

Principal Investigators

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Jason Karlawish, MD

Role: PRINCIPAL_INVESTIGATOR

University of Pennsylvania Institute on Aging

Locations

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University of Pennsylvania, Memory Disorders Clinic

Philadelphia, Pennsylvania, United States

Site Status

Countries

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United States

References

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Marson DC, Ingram KK, Cody HA, Harrell LE. Assessing the competency of patients with Alzheimer's disease under different legal standards. A prototype instrument. Arch Neurol. 1995 Oct;52(10):949-54. doi: 10.1001/archneur.1995.00540340029010.

Reference Type BACKGROUND
PMID: 7575221 (View on PubMed)

Kim SY, Caine ED, Currier GW, Leibovici A, Ryan JM. Assessing the competence of persons with Alzheimer's disease in providing informed consent for participation in research. Am J Psychiatry. 2001 May;158(5):712-7. doi: 10.1176/appi.ajp.158.5.712.

Reference Type BACKGROUND
PMID: 11329391 (View on PubMed)

Sachs GA, Stocking CB, Stern R, Cox DM, Hougham G, Sachs RS. Ethical aspects of dementia research: informed consent and proxy consent. Clin Res. 1994 Oct;42(3):403-12. No abstract available.

Reference Type BACKGROUND
PMID: 7955902 (View on PubMed)

Karlawish JH, Casarett DJ, James BD. Alzheimer's disease patients' and caregivers' capacity, competency, and reasons to enroll in an early-phase Alzheimer's disease clinical trial. J Am Geriatr Soc. 2002 Dec;50(12):2019-24. doi: 10.1046/j.1532-5415.2002.50615.x.

Reference Type BACKGROUND
PMID: 12473015 (View on PubMed)

Appelbaum PS, Grisso T. The MacArthur Competence Assessment Tool - Clinical Research. Sarasota, FL: Professional Resources Press, 2000.

Reference Type BACKGROUND

Rubright J, Sankar P, Casarett DJ, Gur R, Xie SX, Karlawish J. A memory and organizational aid improves Alzheimer disease research consent capacity: results of a randomized, controlled trial. Am J Geriatr Psychiatry. 2010 Dec;18(12):1124-32. doi: 10.1097/JGP.0b013e3181dd1c3b.

Reference Type DERIVED
PMID: 20808101 (View on PubMed)

Other Identifiers

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1R01AG020627-01A2

Identifier Type: NIH

Identifier Source: secondary_id

View Link

IA0070

Identifier Type: -

Identifier Source: org_study_id