Chronic Lyme Disease occurs in patients who have completed a course of antibiotic treatment for Lyme Disease, yet continue to have symptoms such as severe fatigue, sleep disturbance, and cognitive difficulties.
So, I know I'm not alone and figured I would start a topic in this community..... I'm from Michigan...Was diagnosed with MS in 2003, very violent and painful year, MS treatment turned out to be extremely detrimental and almost killed me. Still home bound, recently diagnosed with MTHFR, which is a gene defect making fighting infection very difficult. And, finally, I somehow ended up with a thoracic sryinx, which has been ignored since 2003, but is apparently considered a neural tube defect.....common with MTHFR. All of these different conditions have almost identical symtoms, so 12 years later, I'm still fighting and on a health quest.... So, welcome all you Lyme Suffering, remember to keep up the fight, okay? Stop in and say "Hi" and where your are from, okay?
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.
Master's degree in education
PhD candidate in health science
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Created by shannon.ashoori | Last updated 24 Aug 2020, 04:53 AM
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