Rareshare

Hi, my friend and I recently entered the Genomics BC film contest in which we had to create a short film about genetics geared towards high school students. We chose to focus on gene therapy for our film, and through our research we had a chance to learn more about Leber's Congenital Amaurosis. Since there have been clinical trials with positive results in this field we decided to focus our film around this disease. Now there are a few days left of voting in which we are hoping to win the viewers choice award. Would you mind taking a minute to view the film at: http://www.youtube.com/watch?v=lXsmtGHdOgg Then if you could just log in and hit the LIKE button on youtube in order to vote! Thank you so much for you help! Monica Kaminski

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Community External News Link

Title	Date	Link
Researchers use patients’ cells to test gene therapy for rare eye disease	01/31/2021

Community Resources

Title	Description	Date	Link

Clinical Trials

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.

Complete the screening form.
Review the informed consent.
Answer the permission and data sharing questions.

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.