National CdLS Registry Launches

Patient registries are designed to collect, store and curate data on individuals and their medical conditions. They can be tools to establish natural history studies, establish prevalence of conditions, and connect patients with researchers.

A national CdLS registry has been on the Foundation’s to-do list for many years. In 2010, we were selected to participate in the pilot program of the National Institute of Health’s (NIH) Rare Diseases Registry. Unfortunately, the program’s funding was cut by the NIH in 2013 before it came to realization, leaving the Foundation with a survey and no home for it.

Determined to keep the momentum going, we researched other options, deciding finally on the Coordination of Rare Diseases at Sanford (CoRDS). CoRDS was established in 2010 to serve as a central resource for data on rare conditions with the aim of accelerating research into those conditions. The CdLS Registry at CoRDS will house basic clinical information on individuals diagnosed with CdLS who choose to enroll. Once entered into the registry, participants have control over who can and cannot see the information.

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 CoRDS to access anonymous data in order to determine if any individuals in the registry are qualified for their research studies. The information in the registry may even peak researchers’ interests in CdLS or a certain aspect of the syndrome.

If you are a parent/caregiver or person with CdLS and would like to participate in the registry, go to the CoRDS web site at www.sanfordresearch.org/CoRDS/enroll to begin the process. Whether you enroll by mail or via the online portal, you will receive a username/password and be able to update the registry online annually, choose to participate in approved research studies, and eventually see anonymous data on others in the CdLS registry.

If you have questions about the registry, email [email protected] or go to www.sanfordresearch.org/cords/faqs.