 National Registry
for Childhood Onset Scleroderma
Why do we want your (or your child's blood)?
Each patient will only be asked to provide up to 8
teaspoons of blood (drawn from the lab of your choosing).
Your body won't miss the blood, but it may do others
a world of good! Samples of patients' blood often reflect
the activity of underlying disease. We plan to collect
and perform tests on Registry participants' blood to
determine if there is something specific in the ANA
that might help researchers tailor treatments specifically
towards childhood onset scleroderma patients. We will
then freeze all the blood samples so that other researchers
can apply to the Registry to access them in the future.
Your samples are anonymous. The researchers cannot identify
the donor - nor would they want to. No-one would know
whose blood samples are used in research except that
they were donated to the Registry.
How will you (or your child) benefit?
You will not benefit directly from joining the Registry.
However, you may benefit from the research that springs
from it. One thing is certain; no one will benefit if
no research is done. Research is the only way to find
a cure.
Is this a one-time event?
NO. We want to maintain a long-lasting relationship
with you or your child. Why?
- We want to collect follow-up information on you
(or your child). The more information we have, the
better armed we are to discover the cause and cure.
- We hope that the Registry will stimulate research
in childhood onset scleroderma. If researchers apply
to the Registry to do further studies on patients,
and their projects are approved - we will let you
know about it. That way, you can decide if you want
to participate (or if you want your child to participate)
and we will tell you how to contact the researcher
for more information.
How do you join or sign up your
child?
You will have most likely heard about the Registry
from your doctor, or through announcements in medical
magazines, or from the Scleroderma Foundation. If you
are interested, or have questions, contact the Registry
Coordinator, Jennifer Jablon. You can reach her at 412-383-8674,
or 800-603-8960, or through email at jablonj@msx.dept-med.pitt.edu.
Mailing address: University of Pittsburgh, Arthritis
Institute, 726 South BST, 3500 Terrace Street, Pittsburgh,
PA 15261.
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