Last updated on October 2019

Down Syndrome, Aging & Alzheimer's Disease Study

Brief description of study

Down Syndrome, Aging & Alzheimer's Disease Study

Detailed Study Description

Purpose of the study:
This research seeks to understand how Down syndrome and Alzheimer’s disease may affect a person’s memory and thinking as they get older.

The goals of this longitudinal project are:

  • to follow neurological, learning and memory changes in adults with Down syndrome as they age;
  • to examine brain changes using MRI and;
  • to measure blood biomarkers.

In combination, the study hopes to identify early markers of the development of Alzheimer’s disease in Down syndrome.

Down Syndrome Facts:

  • More than 400,000 people in the United States have Down syndrome.
  • Down syndrome is the most commonly occurring chromosomal condition.
  • Life expectancy has increased dramatically from 25 years a generation ago to greater than 60 years today.
  • 50% of people with Down syndrome age 55 and over may have Alzheimer’s disease.

Alzheimer's Disease Facts:

  • Alzheimer’s is the 6th leading cause of death in the United States.
  • 5.3 million people in the United States have Alzheimer’s disease.
  • Problems with memory and thinking are caused by loss of brain cells and are not part of normal aging.
  • Studying the effects of Alzheimer’s disease as people get older has allowed us to better understand the disease and begin to develop potential cures.

Who Can Join?

  • Persons with Down syndrome age 35 and older with or without signs of Alzheimer’s disease are eligible.
  • Volunteers must be interested in participating in a five-year research study.
  • You, a family member or caregiver will need to answer questions about your health.

Why Should I Join?
You can help us to better understand how memory and thinking change in persons with Down syndrome as they get older and why they are at a higher risk for Alzheimer’s disease.

There will be no direct benefits to you from the research tests in this study. But, you may benefit from the medical examinations, blood tests and brain scans and they may show a disease or illness that needs further treatment. If we find a disease or illness, the study doctor will tell your guardian and your primary care doctor within 72 hours so that you can be treated.

Volunteers are being invited to take part in a research study involving 50 people with Down syndrome, which is being done as part of a study that is funded by the National Institutes of Health.

What will happen if I take part in the study?

  • You will be scheduled for memory and thinking tests and a physical examination.
  • The yearly visit will take about three hours, followed by lunch, and another three hours in the afternoon at the University of Kentucky.
  • You will be asked to take tests that measure thinking skills, memory and a brain MRI every 6 months. This visit will take about two to three hours.
  • You will be asked to give a blood sample each year.

Clinical Study Identifier: TX135381

Recruitment Status: Closed

Brief Description Eligibility Contact Research Team

Volunteer Sign-up

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