Join the CFC Registry

 

“One of the single most important contributions an individual can make to Cardio-Facio-Cutaneous syndrome research is to participate in the Global CFC International Registry”.

– Brenda Conger, Executive Director, CFC International

 

Global CFC International Registry

The CFC 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.

The CFC Registry empowers every person who has CFC syndrome and family members around the world to make a difference in the fight to conquer CFC syndrome and establish treatments. By participating in the CFC Registry and completing your profile survey about your own unique experience with CFC syndrome, you are contributing to a global database about the accessibility of diagnosis, care and treatments, and disease severity of CFC syndrome.

The CFC Registry recognizes the importance of global collaboration. One of the goals of the registry is to enable researchers from around the world to work together to speed research progress. The CFC 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, Patient Crossroads (the company that designed the registry software) 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 Crossroads/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 enroll and learn more about the Cardio-Facio-Cutaneous Registry go to:

Global CFC International Registry