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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 – 9/3/2009
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