 National Registry
for Childhood Onset Scleroderma
What is this registry?
This Registry provides a unique opportunity for researchers
to study a variety of aspects of scleroderma. The Registry
will include systemic sclerosis and various forms of
localized scleroderma such as morphea, linear scleroderma,
and eosinophilic fasciitis.
Because scleroderma is so rare, it is essential to
have a registry to coordinate a multi-center effort
to accumulate adequate information to more accurately
describe the clinical, laboratory, natural history,
and prognosis of this disease.
The existence and availability of a National Registry
for Childhood Onset Scleroderma will directly stimulate
new investigations and assist researchers to identify
adequate numbers of subjects for study.
Who is eligible for this registry? Patients
must have one of the following diagnoses and their disease
must have begun before age 16:
- systemic sclerosis
- Raynaud's disease with either a positive blood antinuclear
antibody (ANA) test result or abnormal nailfold capillaries
(blood vessels)
- localized scleroderma - including morphea, linear
scleroderma, and eosinophilic fasciitis.
How much of your time do we need?
We will request that you complete a yearly questionnaire
and follow-up forms so we can track your (or your child's)
progress with this disease. This should take around
15 minutes/year. This information will enable us to
learn more about the natural history of the disease.
What will we ask from you (or your child)?
We need to have you sign a consent form. This gives
us permission to add your name (or your child's name)
and personal information to our confidential database.
It also gives us permission to obtain a blood sample
(only once—at the beginning of the study). Finally,
the signed consent form allows us to send you the yearly
questionnaires for completion.
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