PARTICIPATING IN RESEARCH AT IND

Frequently Asked Questions:

Who is eligible to participate in the Alzheimer disease brain

imaging study?
Adults with Down syndrome 40 years of age or older may be eligible to participate.
What is the first step?
The first step is to contact Barbara Fussell RN, Director of Clinical Programs at 1-800-
401-6067 or bfussell@indd.org. She will answer any questions you have. The first
and last visit can take place at a convenient time for the participant and guardian.
Transportation can also be arranged for the participant and guardian to come to our
offices in New Haven for the study visits. Late day and early evening appointments
will be available.
What will take place at the meeting?
We will begin by discussing all the details of the study. You will begin by reading the
consent form and having any questions answered before you enroll in the study. The
people who will answer your questions include doctors, and nurses. This meeting
does not obligate you to participate in the study.
If you agree to participate in the study, we will proceed to do the physical exam
including blood work and cardiogram. This is called the screening visit.
How many visits will there be and how long will they take?
We will see you a total of 3 times. The first visit will take approximately 2 hrs. The
brain scan (2nd visit) will take approximately 40 minutes; the entire visit will take
approximately 4 hrs. The 3 rd visit will take 1 hour or less.
Where will the brain scan take place?
The brain scan is the 2nd visit and will be scheduled after the screening results have
been obtained. The brain scan will take place at our facility on the 8th floor of the
Temple Medical Building at 60 Temple St. in New Haven. Transportation can be
provided.
What is brain imaging using a PET camera?
PET imaging is a non invasive procedure that can measure biological activity through
the skull and reveal the living human brain at work. PET studies involve use of a
small amount of radioactivity similar to scans currently available in hospitals.
Will participants be paid for their time?
You will be paid $400.00 at the completion of the study.

Institute for Neurodegenerative Disorders 60 Temple St., suite 8B, New Haven, Ct 06510
Phone 203 401 4300 Fax 203 789 8037
 Toward a Better Understanding of Aging and Down
Syndrome

What do we know about aging and Down Syndrome?

We know that premature aging occurs in people with Down Syndrome. The physical
signs of aging occur 20-30 years ahead of people the same age in the general
population.
Changes in the brain that do not occur in the general population until the late 60’s
may appear in people with Down Syndrome in their 40’s and 50’s. As people age
there is often a change in their thinking and memory and they eventually develop
dementia. A loss of memory and ability to remain independent has also been shown
in people with Down as they age.

Do we understand what causes changes in the brain with aging?

As part of the aging process there are several changes that can occur in the brain.
Frequently, the presence of a substance called beta amyloid and eventually the
development of plaques appear in people as they age. It appears that amyloid may
be present in the brain many years before there is any detectable change in thinking
or memory.

Why is early detection of brain disease important in Down Syndrome?

The life expectancy of people with Down Syndrome has dramatically improved over
the decades. People with Down Syndrome are currently living well past the age of
40. Similarly, medical advances are improving the life expectancy of the general
population. A better understanding of aging has lead us toward promising new
strategies for treatment, prevention and diagnosis of changes in cognition.
Specifically, early detection of amyloid in the brain will be important to development
of medications to slow or stop the progression of cognitive changes in Down
syndrome. An accurate diagnosis in the early stages will also help identify reversible
conditions that may mimic dementia.

What diagnostic tools are currently available to detect brain changes in

people with Down Syndrome?
Although scales and questionnaires are available for individuals with intellectual
disabilities they come with many limitations. As a result there are only crude
diagnostic measures for dementia or other changes in the brain in Down Syndrome.
There is a growing need for more specific tests or biomarkers, to provide an objective
means to detect amyloid in the brain prior to the development of changes in the level
of function and memory in people with Down Syndrome.

What biomarkers are currently being developed at IND?

Functional brain imaging procedures are currently being developed as a way of
measuring amyloid and other changes in the brain that may occur with aging.

Institute for Neurodegenerative Disorders 60 Temple St., suite 8B, New Haven, Ct 06510
Phone 203 401 4300 Fax 203 789 8037
Functional imaging uses nuclear medicine technology, similar to a bone scan or
thyroid scan, to evaluate relatively subtle changes that may be occurring in the brain.
Through the use of PET imaging, tests for detection of beta amyloid are being
evaluated as potential tools for early diagnosis of amyloid in the brain in adults with
Down syndrome.
Most importantly, through the use of PET imaging, the amyloid can be detected well before the onset of
clinical signs or symptoms of cognitive or behavioral change.

Institute for Neurodegenerative Disorders 60 Temple St., suite 8B, New Haven, Ct 06510
Phone 203 401 4300 Fax 203 789 8037