Healthy Living

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

Insight CF will aid in future research with the help of patient input

Insight CF was launched in 2016 and asked the CF community to submit research questions that they viewed as relevant and that they wanted responses to. Over 400 questions were submitted, all of which were sorted into categories:

  • Questions to be answered using data from the CF Patient Registry
  • Questions that could not be answered using data from the CF Patient Registry, but could assist in other research studies
  • Questions that were not research questions, but could be answered through content found on CFF’s website or could be used to create future content for CFF’s website

All of the questions were organized into 22 topics and the top 3 that the CF community found to be most important were chosen for future research. Now, these questions are being turned into research projects, with an aim to help improve future work in CF Patient Registry research, clinical research, and educational resources.