Ectodermal Dysplasias International Registry and Medical Research
A key goal of the Ectodermal Dysplasias International Registry is to assist clinicians, pharmaceutical companies and researchers in developing new clinical trials and studies for Ectodermal Dysplasias. By searching the Registry, study investigators can identify subsets of participants with the characteristics needed for study planning or recruitment. The Ectodermal Dysplasias International Registry Coordinator is also available to review draft recruitment notices and advertisements on behalf of the Ectodermal Dysplasias community to offer feedback regarding content and language.
Registered providers have access to de-identified aggregate clinical data from the patient registry database. Researchers can perform searches of the registry in order to identify target populations for trial/study planning and recruitment.