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Welcome to the Ectodermal Dysplasias International Registry

The purpose of this registry is to consolidate information on those affected by ectodermal dysplasias into a single data repository which will be utilized to enable research and clinical trials leading to future treatments and cures. If you have ectodermal dysplasia or are registering for an individual affected by ectodermal dysplasia, please register with the National Foundation for Ectodermal Dysplasias (NFED). This registry is an international registry and includes all ectodermal dysplasia subtypes. 

Persons who are at least eighteen (18) years of age or older and legally competent, a legally competent parent of a child under the age of eighteen (18) or persons who are otherwise legally authorized to act on behalf of another (e.g. legal guardian),  may register on behalf of themselves or the person whom they are authorized to act on behalf of.  Registrants are encouraged to answer the questions as fully as possible. Not all ectodermal dysplasias are alike; therefore, some questions may not be applicable to you or the person you are registering on behalf of. By asking detailed questions, we will be able to better characterize the syndromes and may also be able to assist those without a diagnosis in obtaining a diagnosis. If there are registry questions you don’t understand, first go to the Glossary tab found at the top for more information. If you have further questions, please contact the NFED or simply type your question into the “Ask an Expert” tab found at the top of the page.

Understanding your Participation in the Ectodermal Dysplasias International Registry

The 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.

How is privacy protected?

All of the information you provide will be maintained in a secure database, and any information that could identify registrants or persons for whom they are legally authorized to an on behalf of will not be shared without expressed approval. Should new knowledge become available that may affect profiled individuals; that is, as clinical trials or research studies are developed for possible participation, you will be contacted. All research proposals for clinical trials must have Institutional Review Board approval from the submitting university and must be reviewed and approved by a Scientific Advisory Council. After these approvals, and based on the information you provided in profiles, we will give you contact information for the investigators responsible for the proposed research study/clinical trial, so that you can decide if you want to learn more. The investigator(s) responsible for the research study/clinical trial will determine if a person is eligible to participate and is responsible for answering any questions about the research study/clinical trial. The Ectodermal Dysplasias International Registry is deeply committed to issues of privacy and identity, and will continue to take every available measure to ensure the security of personal information.  Please click for the complete privacy policy.

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.

What if I register in more than one registry/database?

The Ectodermal Dysplasias International Registry is currently the only official ectodermal dysplasias registry. The goal of the Registry is to coordinate activities with other registries where possible. The Registry will put in place checks and safeguards to help identify duplication of individuals and to coordinate with other registries in placing information in global databases. Personal identifiable information submitted to the Registry will always remain protected. At any time, you reserve the right to withdraw your information from the Registry. Simply contact the Ectodermal Dysplasias International Registry Coordinator, Mary Fete at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or 618-566-2020 and your profile will be removed.

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.

Terms and Conditions

The use of the registry website and the services associated with the website is governed by the following terms and conditions and a privacy policy both of which you must read before using the website. Please click for complete Terms and Condition guidelines.

Registration Process

The registration process consists of two steps:
  • Creation of your account
  • Logging into the registry and completing your profile questionnaire
Once registered, you will need to login to create a profile for each person affected by ectodermal dysplasia for whom you are legally authorized to provide information. Please note, if you are registering for multiple persons, you may use the same login and password to create multiple profiles, click on Add a Family Member. Each person must have a separate profile. Please encourage all members in your family who are affected by ectodermal dysplasia to complete a profile. To begin the registration process, please complete the information below, review the explanation and purpose of the Ectodermal Dysplasias International Registry, and click the Register button at the bottom of the page.

 This profile can be revised and updated at any time. You do not have to complete the profile(s) at one time. To make sure that all information is saved, please click NEXT on the bottom of each page until you reach the end of the survey, Registration Complete!  Once you arrive at the last page your information is saved. Make sure to log out of the Ectodermal Dysplasias International Registry each time. Individuals profiles can be added at any time.

Thank you for taking the time to complete your profile and assisting with the effort in finding treatments and cures for these disorders.

If you have any questions, please contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .