First U.S. Morphea Registry and DNA
Repository for both Adults and Children Established
Investigators from The University of Texas Southwestern
Medical Center at Dallas will attend the Scleroderma
Foundation National Conference for the first time this
July. Dr. Heidi Jacobe is the primary investigator for
a new study establishing a DNA repository aimed at people
with morphea (localized scleroderma). In collaboration
with the Scleroderma Family Registry and DNA repository
in Houston, Dr. Jacobe and her staff will join the conference
to enroll patients with morphea (localized scleroderma)
in the newly created registry. It aims to shed light
on both clinical and genetic aspects of the disease
and underlying causative factors, which are currently
unknown.
All patients, ages 3 years or older, with localized
scleroderma (morphea, linear scleroderma, en coup de
sabre, etc.) will be invited to join the registry. Participants
or their parents/guardians will be asked to complete
questionnaires regarding their morphea history, past
medical history, family history, and quality-of-life.
Additionally, blood samples (2 tablespoons or 30 mL)
will be collected to further define the genes and blood
markers associated with morphea.
Yearly follow-up questionnaires will be mailed to registry
participants. Participants or family members with any
questions will be able to contact their office at 214-645-8971.
Learn
more.
In addition, the Scleroderma Family Registry and DNA
Repository will be seeking samples from attendees at
the conference. The registry seeks individuals in the
following categories:
- People diagnosed with systemic sclerosis
- Parents of individuals diagnosed with systemic disease
- Friends without any autoimmune disease to serve
as healthy controls, age-matched to patient donors
Maureen Mayes, M.D., and Frank Arnett, M.D., serve
as investigators of the registry. The goal of the federally-financed
study is to identify the genetic factors that underlie
scleroderma.
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