Lipodystrophy is a disorder characterized by loss of body fat in particular areas of the body.
Good Afternoon! We are looking for participants for a webcam diary and phone interview. If you are interested, please contact us directly! 86631958581 or firstname.lastname@example.org. Thank you for your time.
Good Afternoon! We are a healthcare market research company. We have been commissioned to carry out market research for a pharmaceutical client. Our goal is to interview individuals diagnosed with Lipodystrophy to understand what daily obstacles people living with this condition have to face. This study consists of participating in a market research study that includes being audio/video recorded. If you are interested, you will be compensated at least $300 for your time. Contact us today at 86631958581 or email@example.com. Thank you for your time.
Hi - This rare disease is posted at my request because I have it. At the moment, I'm too tired to cut and paste all the information I've accumulated right now. I'll do that this week (today is 10/21/08). Thanks - please feel free to jump in here anytime. I
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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