National Ichthyosis Registry
Between 1994 and 2005, with the assistance of FIRST and the NIH, over 500 individuals with ichthyosis were enrolled in the National Ichthyosis Registry. The original registry has been combined with the Ichthyosis Registry at Yale. Information in the Registry is available to researchers to advance understanding of the diagnosis, causes, and treatment of the disorders.
Physician Referral Service
FIRST maintains a service which provides referrals to dermatologists for patients with ichthyosis. Physicians interested in participating in this program should contact FIRST via this link.
Zaenglein AL, Levy ML, Stefanko NS, Benjamin LT, Bruckner AL, Choate K, Craiglow BG, DiGiovanna JJ, Eichenfield LF, Elias P, Fleckman P, Lawley LP, Lewis RA, Lucky AW, Mathes EF, Milstone LM, Paller AS, Patel SS, Siegel DH, Teng J, Tanumihardjo SA, Thaxton L, Williams ML; PeDRA Use of Retinoids in Ichthyosis Work Group.Zaenglein AL, et al. Pediatr Dermatol. 2020 Nov 10. doi: 10.1111/pde.14408. Online ahead of print.Pediatr Dermatol. 2020. PMID: 33169909