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What is the study about

What is the purpose of this study?

Colored Fractional Anisotropy Maps, and the yellow fiber is the 'Left Corticospinal Tract'

Scientists at the University of Kentucky Sanders-Brown Center on Aging are conducting a research study to learn more about how Down syndrome and Alzheimer’s disease may affect an individual’s memory and thinking abilities as they grow older.

Who will be included in this study?

Persons with Down syndrome age 35 and older and their family member or caregiver.  We would like to recruit 40 people who do not have dementia yet and 10 people who do have dementia.  The people with dementia will be asked to come for a single visit while those without dementia will be asked to return to see us every 6 months.

What is involved?

This is a five year study of adults with Down syndrome over age 35.  Participants and family members, or caregivers will be asked to answer questions about a participant’s health including current medications and how well the participant carries out everyday activities, such as getting dressed and making meals.  In this study, the participant will be given different tests of their thinking skills.  These will measure abilities to understand directions, remember, solve problems, and how a person uses their hands to draw a picture. 

The yearly visit will take about three hours, followed by lunch, and another three hours in the afternoon.  The morning part of the annual visit will include a blood sample, memory and thinking tests and a neurological and physical examination.   After a break with a provided lunch, the visit concludes with a brain scan (MRI, magnetic resonance imaging) which will take about two to three hours. 

The blood tests will be used to check the participant’s health, such as hormone levels, infection, or liver function.  The blood sample will also be used to learn more about apolipoprotein E (ApoE), a gene that is associated with an increase risk of Alzheimer’s disease.  The MRI scan of the brain will be used to look at any changes that may come about as one gets older. 

Different memory and thinking tests and a MRI will be given every six months which will take about two to three hours.  Participation in this research study will involve about a 6  hour visit once a year and a two to three hour visit every 6 months for at least the next 5 years, or as long as one would like to take part in the study.

What are the benefits?

MRI machine

There is no guarantee that the participant will receive any personal benefits from taking part in this study.  However, because Down syndrome may lead to a higher risk of Alzheimer’s disease, and there is currently no truly effective therapy available, participation in the study could benefit a participant through improved medical care.  If we find a disease or illness, the study doctor will tell the participant, family member or caregiver and family doctor.

This study is being carried out as basic research to improve our understanding of how Down syndrome and Alzheimer’s are related.  If a participant receives a diagnosis of dementia likely related to Alzheimer’s, he/she, the family member or caregiver will receive information about the standard treatment for this condition.  At the participant’s request, this information will be given to his/her personal doctor.  All study tests are provided at no cost and covered by the research grant.  The costs associated with the ‘routine’ blood tests will be not supported by the research program and are typically covered under personal medical insurance plans.

Who should I contact for more information?

Roberta Davis, Research Administrative Coordinator, University of Kentucky Sanders-Brown Center on Aging, (859) 218-3865 or email rdavi3@email.uky.edu.

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