The National Registry for Ichthyosis and Related Disorders was funded by NIAMS in 1994 to improve understanding of the pathophysiology, diagnosis, and treatment of the ichthyoses. Individuals with ichthyosis enroll in order to obtain and provide information about their disorder. A list of the disorders enrolled in the Registry can be found at www.skinregistry.com Diagnosis is confirmed by strict clinical, histologic, and in the case of recessive X-linked ichthyosis, biochemical criteria. In appropriate cases, mutation detection is offered to individuals in whom known mutations have been shown to underlie their disorder. Extensive identifying, historical, clinical, and quality of life data are obtained during an interview by the Registry coordinator and are entered into a secure database. Over 600 subjects have been enrolled. In most cases (>97%), enrollees ask to be informed of pertinent studies. Thus, a large group of affected individuals with well-characterized disorders interested in participating in studies of their disease is available for industrious investigators. The Registry is available for “mining” at many levels. For example, a recent review of the quality-of-life data of enrollees was presented at the International Investigative Dermatology meeting 1Fleckman P, Hamill G, Weinstock MA: The national registry for ichthyosis and related disorders—Health related quality of life and patient reported outcomes. J Invest Dermatol 121:420, 2003 (abstr)1Fleckman P, Hamill G, Weinstock MA: The national registry for ichthyosis and related disorders—Health related quality of life and patient reported outcomes. J Invest Dermatol 121:420, 2003 (abstr) and has been submitted for publication. Other investigators have used the Registry to identify and inform subjects about studies of specific clinical disorders such as erythrokeratodermia variabilis, X-linked recessive ichthyosis, CIE, and KID Syndrome (Taubenheim, 1999Taubenheim A. Use of the Internet to search for information on arthritis and musculoskeletal and skin diseases.1999Google Scholar;Richard et al., 1998Richard G. Smith L.E. Bailey R.A. et al.Mutations in the human connexin gene GJB3 cause erythrokeratodermia variabilis.Nat Genet. 1998; 20: 366-369Crossref PubMed Scopus (301) Google Scholar;Zettersten et al., 1998Zettersten E. Man M.Q. Sato J. et al.Recessive x-linked ichthyosis: Role of cholesterol–sulfate accumulation in the barrier abnormality.J Invest Dermatol. 1998; 111: 784-790Crossref PubMed Scopus (94) Google Scholar;Fowler et al., 2004Fowler A.J. Moskowitz D.G. Wong A. Cohen S.P. Williams M.L. Heyman M.B. Nutritional status and gastrointestinal structure and function in children with ichthyosis and growth failure.J Pediatr Gastroenterol Nutr. 2004; 38: 164-169Crossref PubMed Scopus (21) Google Scholar). In addition, a discussion group for investigators with clinical interests is maintained on the Registry web site. Investigators from within or outside of the US interested in pursuing this valuable resource are encouraged to contact the Registry for more complete information.