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Wisconsin Registry for Alzheimer's Prevention (WRAP)

Frequently Asked Questions

 

How will I benefit from volunteering for WRAP?

The main benefit from participating is knowing that you are contributing to a better understanding of Alzheimer's disease. Although WRAP is not directly looking for a cure for Alzheimer's disease, it is very important to learn how health and lifestyle factors might protect against developing this disease, and WRAP is helping to address that question.

 

 

Why is it important for people from different ethnic backgrounds to volunteer for WRAP?

Alzheimer's disease affects people from many different ethnic groups and parts of the world. In the United States, rates of Alzheimer's disease are sometimes found to be higher among persons of African-American or Hispanic heritage than for non-Hispanic whites. We do not know why that is the case. Higher rates of cardiovascular diseases among minority groups, or lower levels of education, may contribute to higher rates of Alzheimer's disease. The only way to discover if there are unique risk and protective factors for people with different ethnic backgrounds is for volunteers to become involved in research such as WRAP.

 

While it is not clear why these groups are adversely affected, scientists have learned that there are direct correlations between cardiovascular diseases and Alzheimer's disease. Statistically, African-Americans have higher rates of diabetes, heart disease and high cholesterol which can contribute to heart disease and the risk of Alzheimer's disease if not properly managed.

 

There has been significantly less research conducted with minority volunteers. If researchers are going to find an answer to why Alzheimer's disease is more prevalent in minorities, minorities must be willing to participate in research like WRAP.

 

 

Will I receive any payment or other compensation for participating?

There is a $50 payment for participating at each study visit.

 

 

Is there a charge for participating?

No.

 

 

Will my name or information I provide be shared with other people?

Information that you provide for the study is confidential and will only be shared with researchers involved in WRAP. Your name and any other information that might identify you personally will not be used in publications or study reports. WRAP procedures are reviewed and approved by the Health Sciences Institutional Board of the University of Wisconsin and the other medical centers involved in this research.

 

 

Where are the study evaluations performed?

Your study visit would take place at one of three medical centers: UW Hospital in Madison, Mayo Clinic Health Systems-Franciscan Healthcare in LaCrosse, or Aurora Sinai Medical Center in Milwaukee. Volunteers are generally asked to come to the site that is closest to their home, or to Madison if that is were they initially enrolled.

 

 

How often would I be asked to return for study visits?

The second visit is scheduled about 4 years after the initial visit, and the third visit is scheduled for 2 years after that. The schedule for subsequent visits has not been determined, but it is likely to be every 2 years.

 

 

Are there particular days that study visits are scheduled?

WRAP staff members work with study volunteers to find a good day and time for each participan. Most study visits are scheduled on weekdays, during daytime hours.

 

 

What if I need help getting to study visits?

The study may be able to cover the costs of cab fare or other transportation for participants who live close to study sites but have no way to get there.

 

 

Will I need to stay overnight?

Generally not, but if you are driving a long distance to participate, the study may be able to pay for an overnight stay.

 

 

How long does each study visit take?

The first visit takes about 3.5 hours, the second visit (four years later) takes 4 to 5 hours, and additional visits are likely to take 2.5 to 3 hours.

 

 

What kinds of questions are asked about my history?

You will be asked to provide information about your family history of dementia, educational and work background, medical history and current medications, diet and exercise, daily activities, social stresses and social networks. Each of these factors may be important in understanding healthy cognitive aging and the development of Alzheimer's disease.

 

 

What if any of my vital signs are abnormal when I come for the study visit?

If your blood pressure is high at your study visit, you will be encouraged by the research nurses to schedule an appointment with your physician to check for hypertension.

 

 

What blood tests are given and why?

Laboratory testing is done to determine the presence of known risk factors for Alzheimer's disease and other causes of memory impairment. For example, high levels of an amino acid, homocysteine, have been associated with an increased risk of dementia.

 

 

What is cognitive testing and why do you do it?

Cognitive testing provides a picture of each person's memory and thinking skills. By comparing a person's "cognitive snapshots" across time, we will be able to learn about health and lifestyle factors that promote strong memory, and about factors that may lead to memory problems and Alzheimer's disease. Examples of the cognitive tasks you would be asked to do include memorizing words, numbers, and pictures, solving visual puzzles, and naming words as fast as you can.

 

 

Will I get feedback on results of the blood tests?

Study investigators will let you know if your results are high on particular blood tests (homocysteine, cholesterol and glucose). However, you will not receive feedback on other routine blood test values, or on any genetic testing results. Genetic test findings are collected for research purposes only and are not recommended for clinical use.

 

 

Will I get my cognitive test results?

Part of the purpose of WRAP is to determine which changes in memory over time are indicators of early Alzheimer's disease and which are the result of normal aging or other conditions. Because this is not yet known, most WRAP participants will not receive feedback about cognitive test results.

 

Because mild performance deficits can occur for a variety of reasons, participants will only be notified if there is a persistent or recurring pattern of performance problems across reassessments that are not readily attributable to a specific cause. Participants whose memory performance is within expected ranges will not be contacted.


Only those subjects who indicate that they want feedback about the results of the neuropsychological testing will be contacted.  Before contact is made, the signed consent addendum will be reviewed to confirm their desire to receive feedback
There may be benefits to learning such results (early detection and treatment of a medical condition), but there are risks as well (problems with getting insurance or a job, or feeling worried about a finding for which no treatment is required or appropriate). 

 

 

Are there other Alzheimer's research studies WRAP volunteers may be invited to participate in?

Yes. Many WRAP participants have enrolled in memory research studies conducted by both the Wisconsin Alzheimer's Institute (WAI) and the Wisconsin Comprehensive Memory Program at the UW School of Medicine and Public Health. Current WRAP participants who have completed their 2nd or 3rd wave WRAP visits may be invited to participate in MRI studies conducted by Dr. Sterling Johnson. Please contact Amy Hawley of the Wisconsin ADRC at 608-256-1901, ext. 11418 or e-mail ahawley@medicine.wisc.edu for further information.

 

 

Can I refer people to WRAP?

Recruitment at all WRAP sites (Madison, La Crosse and Milwaukee) remains open to those whose parents did NOT develop Alzheimer's disease or dementia (controls). Minority participants, especially African-American and English-speaking Hispanic participants whose parents developed Alzheimer's disease, are also eligible to participate.

 

Over the past ten years we have enrolled more than 1,500 participants in the WRAP study and we have reached a satisfactory sample size of non-minority participants. Unfortunately we have not reached a significant number of minorities; therefore, in order to have a study that is representative of the entire population, we are making a concentrated effort to increase minority participation.

 

If you or someone you know is interested in participating, please call one of our study coordinators (listed at right) for more information.

 

 

What if I think that I may be developing Alzheimer's disease?

If you have serious concerns about your memory or other cognitive abilities, please contact your primary care provider to discuss your concerns. Memory problems can have many different causes, and a diagnostic evaluation is important to find out what may be affecting your memory. There are several Memory Clinics located around the state that provide expert evaluations of memory concerns. The WRAP study evaluations do not provide a clinical work-up for memory changes.

 

 

Who do I contact for more information about participating in WRAP?

 

Madison site:

Janet Rowley, jsrowley@wisc.edu, 1-800-417-4169 or 608-829-3306

 

La Crosse site:

Carolyn Flock, flock.carolyn@mayo.edu, 1-800-362-5454, ext. 27187 or locally 608-392-7187

 

Milwaukee site:

Nia Norris, nia.norris@aurora.org, 414-219-5159

 

 

 

Return to WRAP Overview

PARTICIPANTS NEEDED

• African-Americans and English-speaking Hispanics/Latinos whose parent(s) developed Alzheimer's disease

• Persons whose parents did NOT develop Alzheimer's disease or dementia (controls)

If you are interested in participating, please contact a WRAP coordinator at the site nearest you (see below).

 

MADISON SITE CONTACT

Amy Hawley
ahawley@medicine.wisc.edu
Phone: 608-829-3306
Toll-free: 1-800-417-4169

 

LA CROSSE SITE CONTACT

Carolyn Flock
flock.carolyn@mayo.edu
Phone: 608-392-7187
Toll-free: 1-800-362-5454, ext. 27187

 

MILWAUKEE SITE CONTACT

Nia Norris
nia.norris@aurora.org
Phone: 608-829-3306
Toll-free: 1-800-417-4169