The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome.
Individuals 25 years and older can consider joining the study.
The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome.
Learning more about the physiology of people with Down syndrome gives researchers better insight into the connection between Down syndrome and Alzheimer’s disease. LIFE-DSR aims to address the questions of why the rate of Down syndrome-related Alzheimer’s disease is so high, and what therapies and treatments can be developed to prevent it.
Individuals 25 years and older can consider joining the study.
People with Down syndrome who take part in LIFE-DSR are known as study “participants,” and their caregivers/family members are called study “partners.”
They will be asked to complete three or more visits to their clinic site over two years.
Participants undergo a “cognitive assessment,” to help the researchers measure things that can’t be measured with a scale or a tape measure, like memory, language, and the ability to recognize objects.
Participants may be asked to participate in additional tests, such as: MRI, PET scan, a collection of spinal fluid, or a goals assessment.
Participants and their study partner will have many opportunities to ask questions before giving consent and joining the study.
Consider joining a study?
Goal Attainment Scaling (GAS) involves working with your health care provider to set goals for the person for whom you care. This allows you to monitor any changes in their symptoms or challenges over time.
Think about symptoms or challenges that are important and meaningful to you and the person you care for. What might you hope to see improve?
Think about the most important symptoms or challenges that they experience day to day. Think, too, about any changes you have noticed over the last few months that are concerning.
You can choose symptoms or challenges shown on the menu or identify a new one.