Healthy Living

Get Involved: Be a Part of the Cystic Fibrosis Patient Registry

Research Voice is a new initiative that takes a different approach

Launched in 2018, Research Voice is a group of individuals with CF and their families who receive training about the fundamentals relating to clinical research. The aim behind the training is to then provide insight and feedback to researchers as they are planning out their studies.

The CF community has several options available to choose from when it comes to contributing to medical research, one of which is the CF Patient Registry. These options can be seen as an ongoing conversation among the CF community and CF researchers for the purpose of creating research ideas and ensuring that promising research studies receive top priority.