Spinocerebellar Ataxia is a progressive group of rare disorders affecting muscle movements.
Looking to connect with others who have an SCA diagnosis. My 15 year old daughter was just diagnosed with SCA 27. We unfortunately can't get into see her geneticist right now because of Covid 19 so am hoping this might be an avenue to connect with others around the world with a similar diagnosis. We were told there have only been 45 cases worldwide so any info would be great. Thanks and stay out there, especially right now.
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.
Hi. My 15 year old daughter was just diagnosed with SCA 27. We were told there are only 45 cases in the world. Would love to connect with others with SCA to talk about symptoms, solutions and...
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