This FAQ may help answer questions you have about participating in WRAP. For further information, please Contact WRAP at the site nearest you.
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Why participate in WRAP?
The goal of our research cannot be achieved without the dedication and volunteerism of our participants. Our study purpose is to characterize cognitive changes and identify predictive biomarkers along with health and lifestyle features that could impact risk and resilience to Alzheimer’s Disease (AD).
The ability to predict risk of AD from biomarker and cognitive profiles obtained in midlife, before symptoms appear, is necessary for development and evaluation of disease-modifying treatments and is critical to understanding the course of the disease over time.
Why is it important for people from different ethnic backgrounds to volunteer for WRAP and AA-FAiM?
Today, there is no known cure and there are no survivors of Alzheimer’s disease, the most common form of dementia. It is the 6th leading cause of death in adults and affects all demographic groups regardless of race, gender or socioeconomic status. But despite the extent of illness in all community sectors, communities of color are at 1.4 to 2 times greater risk of developing the disease and are generally under-represented in research and in the groups involved in receiving services for dementia.
African-American’s Fighting Alzheimer’s in Midlife is a sub-study of the Wisconsin Registry for Alzheimer’s Prevention available to African-American WRAP Participants. WRAP’s recruitment initiatives and AA-FAiM’s study design are informed by the Health Disparities Research Framework outlined by the National Institutes on Aging.
NIA Health Disparities Objectives
“Health disparities are associated with a broad, complex, and interrelated array of factors. Diagnosis, progression, response to treatment, caregiving, and overall quality of life may each be affected by race, ethnicity, gender, socioeconomic status (SES), age, education, occupation, and other as yet unknown lifetime and lifestyle differences.
For example, a multi-ethnic epidemiologic study indicated that prevalence rates for Alzheimer’s disease may be higher for African Americans and Hispanics than for other ethnic groups. Another study found a striking relationship between SES and health and longevity. Gender differences in health and longevity are observed across racial and ethnic groups. We must first understand these differences and their interactions and then work to develop behavioral and public health interventions to reduce disparities and increase quality of life for all of our older citizens.
NIA objectives in this area include:
Understand health differences and health inequities associated with race, ethnicity, gender, environment, socioeconomic status (SES), geography, access, and sociocultural factors among older adults.
Develop strategies to promote active life expectancy and improve the health status of older adults in minority and other underserved populations.
Use research insights and advances to inform policy on the health, economic status, and quality of life of all older adults.
“The NIA Health Disparities Research Framework showcases priorities and investments in this important aging research area. This page is designed to serve as a resource for scientists interested in investigating health disparities related to aging. The Framework outlines four key levels of analysis related to disparities research–environmental, sociocultural, behavioral, and biological—with priority focus areas in each level. As we continue to address the issue of disparities among older minority populations, the Framework will help assess which areas are most in need of additional research resources. Using the Framework as a guide, NIA has awarded over $100 million in research awards since 2015 to explore the environmental, sociocultural, behavioral, and biological determinants of health disparities related to aging.”
How will I benefit from volunteering for WRAP?
Through your participation in WRAP, you will contribute to a better understanding of Alzheimer’s disease. As we learn more about risk and resilience factors, we move closer to our goal of finding treatments or a cure.
Thanks to NIH funding, earmarked to address the disparity of dementia among African Americans, participants in the African Americans Fighting Alzheimer’s in Midlife study, may be eligible to receive a “wrap-around visit” that includes feedback and referrals to participant-specific health promotion programs. AA-FAiM Visits are completed during the regular WRAP Study Visits.
What is Lumbar Puncture and why do you do it?
Lumbar puncture (LP) is a safe and routine procedure to remove a small portion of cerebrospinal fluid (CSF) from the lower back. Research LPs are performed well below the end of the spinal cord, under local anesthesia. Our program has been very successful, and we take a number of steps to minimize the risk of this procedure. Only about 1-2% of participants in our program report side effects beyond temporary soreness.
Obtaining CSF through LP can reveal the presence of amyloid-β and tau tangles in a person’s nervous system. These compounds are of key interest to Alzheimer’s researchers; a growing body of evidence suggests that they play key roles in the cause and/or course of the disease. The ability to link the presence of these compounds in the brain to the trajectory of a participant’s cognition, allows for a greater understanding of the pre-clinical stages of the disease.
What is MRI and why do you do it?
MRI is a non-invasive imaging technique (scan) that works by using an electromagnetic field to read the signals sent by the atoms in the body. It is a routine procedure, common in many clinical and research applications, and with no known side effects. MRI imaging allows us to see the structure and give us insight into the vascular health of a person’s brain, thought to be a key feature in the development of dementia. MRI is also a prerequisite for PET imaging.
What is PET and why do you do it?
Positron Emission Tomography (PET) is an imaging technique that uses very small amounts of radioactive compounds that allow researchers to capture images of processes in the brain such as amyloid and tau protein build up. PET scans are used to study these hallmark features of Alzheimer’s Disease. Research suggests that plaques and tangles appear ~20 years prior to AD symptoms.
Will I receive any payment or other compensation for participating?
Participants receive the following payments for their visits:
- WRAP Cognitive Testing Study Visit (Telephone Only) – $50
- WRAP Cognitive Testing Study Visit (In-person with blood draw) – $75
- Informant Questionnaires – $25
- AA-FAiM Visit – $25
- MRI Visit – $75
- LP Visit – $100
- PET Scans (2) – $100 each
Will my name or information I provide be shared with other people?
Personal identification information (such as name, birthdate, address, phone number, etc.) is kept confidential and is only shared with WRAP researchers and staff. Information shared with outside researchers is de-identified; any personal detail that could be used to identify a participant is removed to the fullest extent possible. WRAP protocol and procedures are reviewed and approved by the Health Sciences Institutional Review Board of the University of Wisconsin and the other medical centers involved in this research.
What kinds of questions are asked about my history?
We ask our participants to provide information about their education, work background, medical history, current medications, diet and exercise habits, daily activities, social stressors, and family history of dementia. Each of these factors may be important in understanding healthy cognitive aging and the development of Alzheimer’s disease.
How long does each study visit take?
Baseline cognitive testing and blood draw visits last approximately six hours; follow-up visits last approximately five hours. Biomarker Visits (LP, MRI scan, and PET scans) are approximately two hours each, allowing time for arrival, consent, procedure, and visit closure.
What is Cognitive Testing and why do you do it?
Cognitive testing provides a picture of each participant’s memory and thinking skills. By comparing a person’s “snapshots” across time, we can ascertain which health and lifestyle factors promote strong memory and which factors may lead to memory problems and Alzheimer’s disease. Our participants complete a variety of tasks, including those to understand their memory, executive function, language, attention, and visuospatial skills.
What if I need help getting to study visits?
WRAP is able to cover the costs of cab fare or other transportation for participants who need assistance. Please Contact WRAP for more information.
Currently, WRAP recruitment is open to individuals of minority backgrounds and certain blood relatives of current WRAP participants. However, other Alzheimer’s disease studies at UW-Madison are recruiting new participants.