CITIZEN Patient Registry
CFC International has partnered with CITIZEN to develop a centralized patient registry that not only provides vital information for researchers, but supports patients, parents, and caregivers through its integrative AI tool. Registries like CITIZEN’S help researchers learn more about CFC syndrome, accelerate the development of new research and treatments, identify issues that need research, and improve the care of all those with CFC syndrome.
The CITIZEN registry enables researchers from around the world to work together to speed research progress.
And, connects all those interested in accelerating CFC syndrome research – affected individuals, families and researchers – with a resource that has never before been available in one place.
Collecting information from CFC Syndrome patients is very important, but protecting the privacy of people affected by CFC is also extremely important. In order to protect your privacy, CITIZEN has designed many safeguards.
Each individual’s information will be “de-identified” so no one who looks at the data can identify you or your child.
Your child’s information will be assigned a code, so that your child is not identified by name.
If a researcher is interested in learning more about your child, the researcher will ask the Patient CITIZEN/CFC genetic counselor to contact you.
A scientist will not be able to receive any identifying information about your child unless you give explicit consent for your child’s identity to be released to that researcher.
For questions about the CITIZEN CFC Syndrome Registry, contact CFC International at info@cfcsyndrome.org.
