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What is
ATTeST?

Is a research study that stands for
Ataxia Telangiectasia Treatment with eryDex SysTem.

What is a
research study?

It means that doctors want to find out if a novel treatment can help children like you.

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Tell me how
it works?

The study starts with a visit to your doctor and he/she may do a check-up, and may ask you to give some blood, as well as do some other tests.

What if I have more
questions about
how it works?

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The doctors and nurses
will explain the study to you
and will answer all the questions
you might have
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Am I obliged to
participate in
the study?

NO! NO!

based upon the information you will receive, you and your parents can decide whether you want or not to participate in the study.

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What will happen
to me if I decide
not to participate
in the study? Cloud 7 Cloud 8 Cloud 9

It is your choice if you want to be in this study. No one will be mad or upset if you choose not to be in it.

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How long is
the study?

The study is made up of 2 parts,
each lasting 6 months.
If you finish the first part of the study,
you will be able to continue
in the second part for a total of one year.

What I have to do
during this study?

You will need to visit the study doctor
approximately every month.
Throughout the study, you will have tests done
and you will be asked questions about how you are feeling.
You will also need to give some more blood at different times during the study.

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Why do I have to
give some blood?

This is required to perform some tests to check
your health and to provide you
with the treatment (the study drug).

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Why is that?
Why can’t I
simply take a pill?

The purpose of ATTeST is to test whether
a new way of delivering the study
drug is helping children like you.

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How that
works?

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Some blood will be taken from you,
and then the blood will undergo some laboratory
procedures and be given back to you
through a blood vessel in your arm

Do I need to be
attached to
any machine
to receive
the study drug?

No. The laboratory procedures needed to insert
the study drug in your blood are done
separately. You may play or have breakfast
and something to drink while the procedures
are done. You will come back when procedures
are completed and your blood is ready
to go back into your body.

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What will happen
if I choose to be part of the study
and decide later
not to continue?

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If you agree to be in the study
and you change your mind about it later,
you can stop being in it.
Just tell the doctor or your parents
if you want to stop at any time.

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What is a placebo?

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A placebo is another drug that looks
just like the study drug
but does not have any medicine.

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Is placebo used
also in ATTeST?

YES
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Will I receive
placebo
or
study drug?

Not you, or your parents
or your study doctor will know
if you are receiving
the study drug (with medicine)
or a placebo (without medicine).

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This is a best way of conducting
a research study like ATTeST.
It is the only way to find out
whether the study drug is actually helping
children like you

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What are
some risks
for being
in this study?

It is not likely, but you may experience
side effects such as headache,
pain, or dizziness.
Remember to tell your parents and the doctor
everything you are feeling
while you are in the study.

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What are some
good things
from being in this study?

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It is possible that you may feel better
and your symptoms may improve
while taking part in this study.
However, there is no guarantee
that you will benefit in any way

Has this drug been given
to other kids like me
already?

Yes.
Another similar study was conducted
in 22 children like you.

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How long was
that study?

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Six months, but some of the children
have been in treatment since 2014.

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But if the drug
was already given
to children like me,
why can’t be simply
given to me
without my participating
in the study?

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There is not enough information
available now for doctors
to decide whether the study drug
is really helping children like you.
This new study is needed to collect all the information
required to come to a final decision.
Your contribution to the study might help you
and children like you in the future.

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Where is ATTeST
being conducted?

If you are interested to know where the nearest study center is located, please click the button below to be redirected to the map