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
· 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.
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 – 12/26/2012
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