1p36 Families—we need your information!! 1p36 Deletion Syndrome is now part of the CoRDS Registry. Our goal is to collect information on as many 1p36 individuals as possible (of all ages) so that there will be one central resource that will help research into 1p36 Deletion Syndrome. The Coordination of Rare Diseases at Sanford (CoRDS) is a centralized international registry for all rare diseases. The registry is run by Sanford Research in Sioux Falls, SD, USA. The CoRDS registry is free for patients to enroll and for researchers to access.
Patient registries are designed to collect, store, and curate data on patients 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 disease. The CoRDS registry for 1p36 Deletion Syndrome will house basic contact and clinical information for any individual enrolled. Please note that once you fill out the registry, no information will be shared with anyone without the permission of the 1p36 DSA.
To have your child be part of the registry, please use this link: https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL. Note that our Angel Families are also welcome to participate in the registry!! This link takes you to the Screening Form. Indicate if you want to fill out information online or by mail. Be sure to select that you found out about the registry through 1p36 Deletion Support & Awareness.
- If you choose to submit info online, you will receive an email with instructions on how to do this, including a username and temporary password.
- If you choose to submit information by mail, you will be mailed an information packet (including a pre-paid return envelope) with the materials you will need to enroll your child.
The CoRDS registry process is designed to be simple and user-friendly. If you have any questions about this process, please contact cords@sanfordhealth.org or call them at 1-877-658-9192.
Once you have enrolled, you will be contacted annually by CoRDS personnel to update your information.
CoRDS takes your privacy and security very seriously. You can find more information about their security measures on the CoRDS website.