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Why Join?


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.

Registry Data and Curation

De-identified data gathered from self-report participant profiles is made available to the Ectodermal Dysplasias community of registered participants, families, medical care providers and researchers, in the hope that this data will support breakthroughs and expedite clinical trials that could lead to better treatments and care management.

Ectodermal Dysplasias International Registry curates the clinical and genotypic information submitted by each participant. Curation is an ongoing and continuous process; however, searches of the Registry will include all curated and uncurated data provided by participants. Specific details of curation can be discussed with DuchenneConnect, and may be used to refine such searches. Only completed participant profiles are included in searches of the Registry database.

Registration


Please complete the form below to request access to the Ectodermal Dysplasias International Registry research portal. Once approved, you will have access to graphs and charts representing all DuchenneConnect registrants.

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