The Registry’s purpose is to improve methods of diagnosis and treatment of the ichthyoses. We do this by creating a list of affected individuals. This should have a profound impact on research in the ichthyoses and related disorders, since one of the greatest obstacles facing researchers doing studies on rare diseases in locating affected individuals willing to help them out.

The Registry should solve this problem by creating a central resource containing diagnostic information about the individuals who have enrolled. Researchers can then easily locate affected individuals, as well as obtain information about the frequency and involvement of their disorders. In addition, even if you choose never to participate directly in research studies, the information you provide the Registry should prove valuable in better understanding these disorders.

The Registry will NOT give identifying information out to researchers. Instead, those enrolled in the Registry will be contacted by the Registry and informed of any appropriate research projects. At that time, you can decide for yourself if you wish to contact the researcher involved.

Please contact the Registry Coordinator, Geoff Hamill, to ask more questions and to obtain enrollment forms.

http://depts.washington.edu/ichreg/ichthyosis.registry