Diabetes insipidus is a disorder characterized by excretion of large amounts of diluted urine. Nephrogenic diabetes insipidus is cuased by the kidney's inabilityto respond normally to ADH.
I have acquired NDI as a result of taking a prescription drug and not being told of the possibility of permanent, untreatable and irreversible side effect of NDI. Lately water, critical to all forms of life and especially critical to someone with NDI, has actually been dehydrating me due to the metabolic acidosis resulting from the dehydration and ongoing electrolyte imbalances. I am searching for someone who has insight into the science behind the effects of differing pHs of different waters (purified/reverse osmosis=low pH, naturally alkaline=higher pH, RO + electrolytes=even higher pH) and how to get some kind of homeostasis back to my body!
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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