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THE NATIONAL
REGISTRY FOR ICHTHYOSIS AND RELATED DISORDERS at the University of Washington was created with the support of the
National Institutes for Health to encourage research into the diagnosis and
treatment of the ichthyoses and related disorders. We have approached this
goal by having people that are affected by these conditions enroll in the
Registry as well as by sharing information about ongoing research projects
with those who ask to be notified.
Persons with the following
diagnoses are enrolled:
·
Inherited
Ichthyosis
·
Erythrokeratodermas
·
Darier disease
·
Hailey-Hailey
disease
·
Palmar-Plantar
Keratodermas
·
Pachyonychia
Congenita
·
Extensive
Epidermal Nevi
TO APPLY FOR REGISTRY SUPPORT OF
STUDIES
Investigators wishing to “mine” the database or
identify enrollees appropriate for study should submit a request to the
Registry after obtaining local informed consent. After review and approval,
the database will be queried. For further investigations, appropriate
individuals are identified from the Registry database, notified of the
study, and invited to contact the investigator directly if interested.
ENROLLEES
Although we are no longer enrolling new persons,
we value your continued participation in the Registry.
Protecting your confidentiality is important. All contact information is kept
confidential.
We
do not release any contact information about persons who are enrolled and
there is no obligation to participate in any research projects at all.
New
enrollments are now closed, however, we continue
to be available to investigators as a resource of collected (anonymous) information, and
by informing enrolled individuals of appropriate studies. We have
accomplished our initial goal of identifying affected individuals and
confirming their diagnosis by clinical, histopathologic and biochemical
studies. Over 600 well-characterized individuals have enrolled in the
Registry, most of whom are interested in
participating in research related to their disorder. A large database with
historical, clinical, and quality of life information has been established.
We plan to maintain this valuable resource for future investigations.
Last Update – 7/18/2008
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