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...

Take a small amount of blood from

your arm…

Put a cuff around your arm and

measure your blood pressure…

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 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!

• We will measure your tummy and arm with a measuring tape!

A Special X-Ray of the body called a DXA

scan will be done

• 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!

…this will help measure the

amount of fat and non-fat tissue in

your body

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.

Your mom or dad will be nearby filling out their own surveys too!

• 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!

When you go home, we will ask you to wear an

armband…

It looks like this

• 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.

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!