Minimal Change Disease is a disease of the kidney usually affecting children.
Diagnosed with MCD April 2008. Have so many questions and so little available information. Was on Prednisone for 8 months. Went into remission for 8 months and seem to have relapsed (not for sure). I will be seeing the Nephrologist today for a formal diagnosis and the possibility of going back on Prednisone. I'm 80 years of age, always been extremely healthy. Still am except for this. Literature on MCD is minimal and prognosis is generally good for controlling it, I would love to have more info on Senior MCD victims. Also hope to find a support group somewhere out there.
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.
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