Cauda equina syndrome
natural history study
The Cauda Equina Foundation is proud to introduce and announce the very first cauda equina syndrome (CES) Natural History Study. Our team of very dedicated volunteers created this questionnaire in partnership with CoRDS (Coordination of Rare Diseases at Sanford).
What is a Natural history study?
The natural history of a disease (condition or syndrome) is typically thought of as the course the condition takes in the absence of intervention in people who have the condition, from its onset until its resolution or the patient's death.
A Natural History Study is a planned observation of a large number of participants over a sufficient period of time using a registry where each patient's course is tracked.
A Natural History Study is a planned observation of a large number of participants over a sufficient period of time using a registry where each patient's course is tracked.
What is a patient registry?
“an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).”- Workman TA
WHo is eligible to participate?
Anyone who was diagnosed with cauda equina syndrome by a physician at least six months ago.
Why is it important to participate in the natural history study?
The knowledge obtained from a Natural History Study is essential to help plan drug and device intervention studies. In the case of CES being a syndrome with a large variety of symptoms it is more important than ever to try and describe its natural history based on the empirical data this study will generate.
Why did the cauda equina foundation partner with Cords
The Cauda Equina Foundation is the ideal organization to lead this project given our vast knowledge and experience with this syndrome, including the medical expertise to design and execute a Natural History Study. We are very fortunate to be partnering with CoRDS who have the rare disease registry infrastructure up and running.
We thank you!
The Cauda Equina Foundation thanks you for participating in the Natural History Study. Participants who complete the questionnaire will be compensated in appreciation of their time, while supplies last.
Do you have any questions?
The Cauda Equina Foundation
Email: [email protected]
Phone: 407-984-6394
CoRDS
Email: [email protected]
Phone: 877-658-9192
Email: [email protected]
Phone: 407-984-6394
CoRDS
Email: [email protected]
Phone: 877-658-9192