Emily’s Entourage (EE) actively maintains a patient registry of individuals with cystic fibrosis (CF) who have at least one copy of a nonsense mutation of CF. The registry allows you to contribute your or your loved one’s data and become informed of relevant research, clinical advances, and drug trials.
To add your or your loved one’s information to the database, please fill out the form below. It takes about five minutes to complete.
Your privacy is of critical importance to us. Individual personal information is never sold or shared with companies or outside institutions. Any individual in the world with at least one copy of a nonsense mutation of CF (also known as a premature termination codon or PTC) is eligible to sign up. Adults with CF and anyone over the age of 18 who is legally authorized to submit medical information on behalf of their loved one with CF can enroll them in the registry (e.g. parent, spouse, legal guardian, etc.).