Uveitis is inflammation of the middle layer of the eye.
If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com Lisa Moreno-Dickinson CEO/President for Stop Childhood Auto Inflammatory Diseases www.stopcaidnow.com
Fot the past seven months I have been following what could be called standard treatment for uveitis. I wiil like to know from other patients experience what are the treatments, the results and how long did it take to deactivate.
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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Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Created by stopcaidnow | Last updated 12 Feb 2011, 05:44 AM
Created by luisal | Last updated 15 Mar 2010, 02:30 AM
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