Understanding your Participation in the Ectodermal Dysplasias International RegistryThe purpose of the profile is to assist clinicians, pharmaceutical companies, and researchers in developing new treatments for ectodermal dysplasias. Collecting your profile information will enable international support groups, clinicians and researchers to learn more about the scope and impact of ectodermal dysplasia on individuals and families. Having this information is crucial in the process of developing new, improved treatments for ectodermal dysplasias. The Ectodermal Dysplasias International Registry will also provide you with a means of accessing information regarding clinical trials for which profiled individuals may be eligible.
How will creating an Ectodermal Dysplasia profile affect me or the person for whom I am creating a profile?This registry has been created specifically for individuals affected by ectodermal dysplasias. After registering and creating a profile, you will be contacted periodically with information about new research studies/clinical trials as they become available, as well as upcoming activities and resources.
Will I need to provide the Ectodermal Dysplasias International Registry with additional information?It is important to have the most current information in the database to assist in developing research studies/clinical trials. Therefore, each year we will ask you to update each profile you created. You will receive notification annually to return to the NFED website, to update your profile. We ask you to fax or upload your genetic test results and any other relevant reports or testing results. You can fax this information to 618-566-4718. Please make sure the affected person’s name is clearly written on all reports. Please include a cover sheet that is marked as “Registry Information." You can also upload these reports directly to your profile in the attachment section of the registry.
What happens to the information I put in a profile, and who has access to it?The goal of this registry is to make the information you provide searchable, while protecting individual identities. De-identified data (information from which all personal identification has been removed) gathered from the profiles will be made available to medical researchers, in the hope that this de-identified information will support breakthroughs and clinical trials that could lead to better treatments and care management. The de-identified data collected and compiled by this registry belongs to the NFED. The NFED is the current guardian of the information contained within the registry. The NFED will perform the searches for specific questions within the Ectodermal Dysplasias International Registry and provide reports back to you and the medical research community. Some of this de-identified information will also be shared with databases focusing on the broader range of ectodermal disorders. A subset of de-identified information collected from each profile may be shared with global databases with whom the Ectodermal Dysplasias International Registry collaborates, in order to develop global knowledge of ectodermal dysplasias that may lead to new research studies/clinical trials and improved clinical treatment.
As a parent/guardian, how deeply should I involve my child in the registration process?We believe that it is important for all the people participating in this registry to be as informed as possible. Therefore, if you are a parent or legal guardian of a child under the age of 18, but feel that the child is old enough to understand the idea of the registry, we suggest that you talk with your child and obtain his/her cooperation to participate in this registry. If you have any questions regarding the Ectodermal Dysplasias International Registry registration process, a NFED coordinator is available to discuss them with you. Click on the "Ask an Expert" link once you have registered.
Registration ProcessThe registration process consists of two steps:
- Creation of your account
- Logging into the registry and completing your profile questionnaire