Tethered Spinal Cord Syndrome is a rare disorder caused by tissue attachments, limiting the movement of the spinal cord within the spinal column.
Since tethered cord surgery, I have developed Tarlov cysts. Does anyone have any info on this condition? Need Help!
Also have the above condition. Doesn't any one else have these problems? I know I'm not the only one. I don't know just what to do on this site. I'm also a new computer user so I'm kinda lost here.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
diagnosed with syringomyelia and tethered cord
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Created by Jean | Last updated 16 Nov 2021, 09:04 PM
Created by Jean | Last updated 25 May 2012, 08:44 PM
Created by Jean | Last updated 12 Oct 2010, 06:32 AM
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