Welcome to the CFC International Patient Insights Network

  

Join patients around the world in building the PIN community.

START MY PROFILE

  

Find out about research studies and clinical trials.

LEARN MORE

  

Advance research and speed development of new treatments.

SHARE

I
n order to accelerate translational efforts (moving from basic laboratory research to meaningful health outcomes, such as therapies and treatments) related to Cardio-Facio-Cutaneous syndrome (CFC), CFC International is partnering with Invitae to launch their Patient Insights Network (PIN). The registry is important for better characterizing and understanding CFC syndrome.  The registry will provide valuable information for families and doctors to make the best care decisions possible, and will help researchers determine the most important challenges to address. The registry will also help scientists find out if there are any CFC syndrome patients who might be a good match for their research studies.
 
Collecting information from CFC syndrome patients is very important, but protecting the privacy of those affected by CFC syndrome is also of paramount importance. In order to protect your privacy, Invitae has designed this registry with the highest safeguard standards possible. All information from you and your child is "de-identified," meaning that anyone looking at the data cannot identify you or your child.  If interested, your child’s information will be assigned a code. If a researcher is interested in learning more about you or your child, the researcher will ask the Invitae registry coordinator to contact you. A scientist will not be able to receive any identifying information about you or your child unless you give explicit consent for your child’s identity to be released to that researcher.
 
For more information, please contact CFC International at: info@cfcsyndrome.org
Frontpage Slideshow | Copyright © 2006-2011 JoomlaWorks Ltd.

Click here to register now!

I
n order to accelerate translational efforts (moving from basic laboratory research to meaningful health outcomes, such as therapies and treatments) related to Cardio-Facio-Cutaneous syndrome (CFC), CFC International is partnering with Invitae to launch their Patient Insights Network (PIN). The registry is important for better characterizing and understanding CFC syndrome.  The registry will provide valuable information for families and doctors to make the best care decisions possible, and will help researchers determine the most important challenges to address. The registry will also help scientists find out if there are any CFC syndrome patients who might be a good match for their research studies.
 
Collecting information from CFC syndrome patients is very important, but protecting the privacy of those affected by CFC syndrome is also of paramount importance. In order to protect your privacy, Invitae has designed this registry with the highest safeguard standards possible. All information from you and your child is "de-identified," meaning that anyone looking at the data cannot identify you or your child.  If interested, your child’s information will be assigned a code. If a researcher is interested in learning more about you or your child, the researcher will ask the Invitae registry coordinator to contact you. A scientist will not be able to receive any identifying information about you or your child unless you give explicit consent for your child’s identity to be released to that researcher.
 
For more information, please contact CFC International at: info@cfcsyndrome.org

Phones and tablets may default the first letter to uppercase.

LEARN MORE