National CdLS Registry
The CdLS Foundation has established a CdLS Registry at the Coordination of Rare Diseases at Sanford (CoRDS). Patient registries are designed to collect, store and curate data on individuals to be used for a specified purpose. They can be tools to establish natural history studies, establish prevalence, and connect patients with researchers who study their conditions
The CoRDS registry specifically houses basic contact and clinical information on any individual who chooses to enroll and who has been diagnosed with a rare condition.
For those of you interested in participating in this registry, go to CoRDS to begin the process. Paper surveys are available but you can also enroll online. Online registration requires Firefox or Internet Explorer. Safari and Chrome are not yet supported.
Once the data is entered by CoRDS, you will receive a username/password and be able to update the registry online annually, choose to participate in approved research studies, and even see how you child compares to others in the registry.
What's the benefit of participating? Simply put, advancing the understanding of the syndrome and encouraging further research into its causes. Researchers with appropriate approval may apply to access an anonymous data set in order to determine if any individuals in the registry are eligible for their research studies. The information in the registry may even peak the researchers interest in CdLS or a certain aspect of the syndrome.
Once entered into the registry, you have control over who can and cannot see the information.
This service is provided at no charge to you or the CdLS Foundation since CoRDS is funded by an endowment.
Have questions? View a powerpoint of information about CoRDS and the registry.
If you have questions, email or call 800-753-2357.