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.
with the following diagnoses are enrolled:
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.
we are no longer enrolling new persons, we value your continued
participation in the Registry.
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 – 11/14/2012