The Rare Kidney Stones Consortium (RKSC) Contact Registry is a method by which patients with Primary Hyperoxaluria, Cystinuria, Dent disease and APRT deficiency can register themselves in order to be contacted in the future about clinical research opportunities and updates on the progress of related research projects.
Participation in the RKSC Contact Registry helps us to inform patients and / or parents of patients about clinical research studies performed in our multi-center clinical research network. Patients who register in RKSC’s Contact Registry will be contacted periodically with research updates and with opportunities to participate in new or ongoing research projects.
Feel connected and empowered by joining the RKSC Contact Registry. Individuals who participate in research make a real contribution and make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives.
This project is part of the Rare Disease Clinical Research Center Network, a network of clinical centers, each involved in research of specific rare diseases. This network is funded by the National Institutes of Health. Patients who participate in research make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.
Benefits of Joining the Contact Registry include:
- Communication of open recruitment for clinical studies of your disease
- Notice of opening of new clinical sites doing research on rare diseases
- Information on activities from affiliated awareness and advocacy groups
...and future opportunities to participate in research!
Who Can Join the Contact Registry?
Patients and parents of patients with Rare Kidney Stones are invited to join our Contact Registry. We encourage all patients with rare kidney stones from the United States and around the world to join. Any patient with a confirmed or suspected diagnosis of rare kidney stones can register.
How does the Contact Registry Work?
After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) diseases.
Privacy
Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.
Join the Contact Registry : Join us in the fight to conquer rare diseases!
