Emily’s Entourage (EE) maintains a global patient registry of individuals with cystic fibrosis (CF) who are genetically ineligible for CFTR modulators or do not benefit from existing modulator therapies. The registry allows these individuals to contribute their data and become informed of relevant clinical research and trials. It also accelerates the development of lifesaving therapies by offering faster, more targeted clinical trial recruitment.
How does EE support clinical trial site identification?
Joining the EE registry unlocks opportunities to influence where clinical trials take place, leveraging participant geography to drive trial site selection. For people with CF, this means potential access to experimental therapies they may not have otherwise had the opportunity to receive. For companies, it means accelerated trial recruitment and enrollment.
The registry is open to individuals with CF who are genetically ineligible for CFTR modulators, including those with nonsense mutations, or those who do not benefit from a currently available CFTR modulator due to suboptimal response or side effects. For those under the age of 18, their parents or legal guardians can register on their behalf. The registry is open to individuals from around the world.
Joining the registry takes just a few minutes and requires basic demographic, contact, and genetic information.
Once you have joined, you will be added to the database to be contacted by EE about future clinical trials that you or your loved one might qualify for based on the information you provided. You can log in at any time to see the current trials for which EE is recruiting and to update your profile.
Our registry meets compliance requirements for the communities EE serves, including General Data Protection Regulation (GDPR) requirements for the United Kingdom and the European Union.
The privacy of registry data is of critical importance to EE. Read the privacy policy for EE’s patient registry.