Fifteen years ago, I became part of the CF community after my two daughters were diagnosed with cystic fibrosis. After the initial shock and the struggle to establish a new normal for our family, I longed to have a connection to other families traveling through life with CF. Although I searched for ways to connect with other community members, there were very few options.
Initially, the only door open to patients and families was fundraising. So, I joined my local Great Strides committee. A few years later, another door opened, and patients and families were invited to help establish an advisory council for their CF care center. I jumped at the chance to be more connected to my local CF community.
Today, more doors have opened, and the Cystic Fibrosis Foundation is now working to include the voice of the CF community in every aspect of its work.
In 2015, I joined the newly formed Patient and Family Research Advisory Committee, a group of people with CF and CF family members from across the country. Our mission is to include the patient voice in the design and dissemination of CF research, focusing on research using the data in the CF Foundation Patient Registry.
Late last year, we launched the Insight CF Registry Research Project -- the CF Foundation's first community-driven research initiative. As each of these doors have opened, my connection to the CF community has grown, and I am excited that there are now so many options for more folks to make a stronger connection. Participating in the Insight CF project has given me the opportunity to reach out and encourage others to get involved, and add their voice to the work of the CF Foundation.
We began the Insight CF project by asking people in the CF community to submit research questions that could be answered through the Registry. More than 350 people submitted questions, and more than 400 questions were asked! The questions were sorted into three categories:
- Questions we already know the answers to
- Questions that cannot be answered by the Registry (they would require more research)
- Questions that can be (but have not already been) answered with data already in the Registry
All submitted questions will be used to help us understand the community's needs and to help inform the research moving forward. The questions that fell into the first category will be shared across the CF Foundation to assist with content development on the CF Foundation's website. The questions in the second category -- those that would require more research outside of the Registry -- will be forwarded to researchers for consideration.
The questions that fell into the third category have already come back to our Insight CF project team (i.e., adults with CF, parents, siblings, and spouses). We worked to condense those 150 questions into a list of 22 questions.
We are now asking you to vote on which questions are most important to you so that we can answer the top questions by using the Registry. We need your vote, because no one knows CF better than the people who have it, their caregivers, family, and friends.
Let us know what is important to you. Your experience is valuable, and your vote will help us know which questions will have the greatest benefit to the CF community. The CF Foundation is listening. Make your voice heard. Vote.