The Down Syndrome
Metabolic Health Study
Welcome to the DS Metabolic Health study at
the Children’s Hospital of Philadelphia!!
We are going to measure a lot of different things today—this book
is going to help show you what you will be doing!
First a nurse is going to measure your
height and weight
*If you are a girl, a nurse will also ask you for a urine sample.
Then she will...
Put a cuff around your arm and
measure your blood pressure…
Take a small amount of blood from
your arm…
We might ask you to have a special test done
to see how well your body deals with sugar
First we will ask you to drink a sugary drink ! It tastes kind of
like a flat soda!
Then the nurse will take blood from your arm four times over
two hours. All you need to do is sit still in a big comfy chair!
Next, we will take special height and weight
measurements to see how you’re growing!
• We will measure how much you weigh
on a scale just like this one
• Be sure to stand on the scale with both
feet and hold on!
• We will measure your height
to see how tall you are.
Just stand up tall and hold your
head straight!
• We will also measure your
height when you are sitting on a
little wooden bench.
This is called “Sitting Height”
We will also take measurements of your
waist and skin
• We will measure your tummy and
arm with a measuring tape!
• We will use a special tool on
your arm and belly to tell us how
much muscle and fat you have.
It feels like a
squeeze, and
might tickle!
A Special X-Ray of the body called a DXA
scan will be done
…this will help measure the
amount of fat and non-fat tissue in
your body
•
All you need to do is lie flat on your back on
a table while the machine moves over your
body—it only takes 5 to 10 minutes!
We are also going to look at your heart using a
special machine. This is called an echocardiograph
• You will remove your
clothing from your upper
body and will be covered
in a gown or sheet to
keep you comfortable
and cover your private
areas.
• All you need to do is lay
flat on an exam table while
a nurse puts a clear gel
and a patch on your chest!
It will help pick up signals
electronically, so we can
look at your heart.
This test does not hurt, and will last
about 45 minutes!
A special test called a Pulse Wave Velocity
will also be done.
• We will use a cuff and a
special wand to look at how fast
your blood flows in your neck,
arm, and leg.
* Be sure to lay very flat and
still on the exam table!
Next, a doctor will perform a physical exam…
The doctor will examine your private areas, so the doctors can see how
you are developing and growing.
Lastly, a research member will fill out some
surveys (lists of questions) with you.
• They will read each question out loud, and all you need to do is tell
them your answers! No need to worry about being right or wrong! 
Your mom or dad will be nearby filling out their own surveys too!
When you go home, we will ask you to wear an
armband…
• You will wear it everyday, even when
you sleep! It will help us see how you
move around everyday.
• You can take it off if it is going to get
wet, like when you are showering or
taking a bath.
It looks like this
Look how much Amber likes wearing her armband!
The study team says
“THANK YOU” for being a part
of the Down Syndrome Metabolic
Health Study!