Response to Horn et al.

Abstract

TO THE EDITOR We thank Horn et al. (2012) for mentioning the Genetic Alliance, the Pseudoxanthoma Elasticum International Registry, and the National Psoriasis Foundation and providing Internet links to these registries in their letter regarding our commentary ‘‘Significance of Patient Registries for Dermatological Disorders’’ (de Souza and Miller, 2012). Table 1 in our commentary included a select number of registries and was not meant to be an exhaustive or all-inclusive list. With regard to the comment from Horn et al. (2012) that Table 1 erroneously lists industry funding for the Hereditary Angioedema Association (HAEA) registry, we listed the HAEA as the sponsor of the HAEA registry and noted that the HAEA receives funding from the industry sponsors listed in Table 1, as the HAEA lists these sponsors on their registry’s webpage. The Cystic Fibrosis (CF) Registry was mentioned as a gold standard because, as stated in the commentary, it has enrolled a large percentage (88%) of the estimated number of CF patients in the United States. The data from the CF Registry are easily accessible in annual reports published by the CF Foundation. It would be helpful if similar annual reports for the registries listed in Table 1 are made publicly available by their sponsors. This will facilitate the comparisons between the registries suggested by Horn et al. We thank Horn et al. (2012) at the Genetic Alliance, the National Psoriasis Foundation, and the Pachyonychia Congenita Project for their valuable contributions to patient advocacy and registries for dermatological and other disorders.