Hi ,

For Andrea Parrella, a Stage IV Cholangiocarcinoma survivor, cancer research is personal. Andrea participated in a clinical trial that led to medication to treat cholangiocarcinoma patients with FGFR2 mutations. Andrea’s desire to join a clinical trial made a tremendous difference.
 
You, too, can make a difference. When you participate in cholangiocarcinoma research, you contribute to our understanding of CCA and bring us closer to a cure.
 
In addition to participating in a clinical trial, here are two other ways you can become involved in research:
 
  • Ciitizen: Ciitizen gathers your medical records for free, giving you ready access to your health data to help you coordinate your medical care, get a second opinion, and make informed decisions. With your permission, your de-identified data is also used to contribute to cholangiocarcinoma research. Once Ciitizen has collected your records, you can register for their Clinical Trial Finder. Based on your records, this tool will match you to the most appropriate clinical trials and generate a report you can share with your doctor(s).

  • Given the valuable service they provide to our community, CCF has joined forces with Ciitizen, making them a trusted partner. Ciitizen does not share or otherwise release your medical information without your permission.
 
  • You can register with Ciitizen and sign up for the clinical trial finder, here.

  • Genome-Wide Association Study (GWAS): Sponsored by Mayo Clinic, the GWAS examines genetic variations associated with diseases like cholangiocarcinoma. Your participation helps scientists make meaningful progress towards finding a cure as they research new ways to prevent, detect, diagnose and treat cholangiocarcinoma. Your participation may lead to the discovery of new genetic risk factors for cholangiocarcinoma. 

 
All my best,
 
Melinda Bachini
 
P.S. In next week's email, I’ll share several resources. I want you to have all the information you may need but I don’t want to overwhelm you. If you’d prefer to have access to all of this information at one time, feel free to browse everything now.