CIITIZEN (formerly INVITAE) Registry

The CIITIZEN (formerly Invitae) Registry is a centralized resource that is vital to helping researchers learn more about CFC syndrome, accelerating the development of new research and treatments, identifying issues that need research, and improving the care of all those with CFC syndrome.

CFC International is moving from the former Invitae platform as it is no longer active for research use. While the information families may have entered to Invitae is still present and accessible, new registration or application is not available. The CIITIZEN platform will be announced hopefully in July 2024 at our conference in Orlando, FL. USA. One of the primary goals of the registry is to enable researchers from around the world to work together to speed research progress. The Ciitizen Registry 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, CIITIZEN 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.  If a researcher is interested in learning more about your child, the researcher will ask the Patient CIITIZEN/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.

To learn more about the CIITIZEN CFC Registry, contact CFC International CEO, Troy Greisen. tgreisen@cfcsyndrome.org