For Patients
Ectodermal Dysplasias Registry
Welcome!
The Ectodermal Dysplasias Registry is a research study collecting information from individuals (or their authorized representatives) in the United States and Canada who are affected by any of the 50+ types of ectodermal dysplasias. It’s sponsored by the National Foundation for Ectodermal Dysplasias (NFED) and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform.
The ectodermal dysplasias are a diverse group of rare genetic disorders that cause the skin, hair, teeth, nails and sweat glands to develop and function abnormally. Other parts of the body may also be affected.
These disorders are rare, which makes it difficult to gather information and develop treatments. When you join the Registry, you become part of a community created to energize, inform, engage and support ectodermal dysplasias research. We come together to help find better treatments, more quickly.
About the NFED
The NEFD is a nonprofit organization and worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to people living with these disorders. We serve more than 11,000 families in 120+ countries.
For more information, visit www.nfed.org.
What is a Registry?
A Registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disorder-specific clinical trial recruitment. The Ectodermal Dysplasias Registry serves to:
- Support the design of clinical trials that explore new treatments for ectodermal dysplasias;
- Describe the people who have ectodermal dysplasias and to better understand the variability and stages of ectodermal dysplasias;
- Understand how ectodermal dysplasias changes over a person’s lifetime;
- Learn about clinical practice patterns and variations over the course of treatment;
- Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with ectodermal dysplasias; and
- Identify people with ectodermal dysplasias who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies.
What types of data will be collected in the Ectodermal Dysplasias Registry?
The Ectodermal Dysplasias Registry collects data on the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
Is the data secure?
The Ectodermal Dysplasias Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database. Communications between the Registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the Registry and the security measures minimize the chance of this occurring.