Share Your Perspective: CF Pregnancy & Modulator Therapy Research Survey

Living with cystic fibrosis — or being part of the CF community as a parent, carrier, family member, or healthcare provider — can involve many complex conversations surrounding pregnancy, family planning, prenatal testing, and new treatment possibilities. With advances in highly effective modulator therapies such as Trikafta, perspectives and experiences around these topics may be changing rapidly, but there is still limited research on how the community feels about them in different contexts.

My team is conducting an IRB-approved research survey through the University of Arkansas for Medical Sciences (UAMS) and Arkansas Children’s Research Institute (ACRI) to better understand community attitudes on:

- CFTR modulator use during pregnancy and breastfeeding, plus the practice of in utero therapy
- Carrier screening and prenatal testing for CF
- Reproductive decision-making and family planning

We are hoping to hear from adults with CF, parents/relatives/caregivers of individuals with CF, CF carriers, healthcare providers, and others connected to the CF community. The survey is limited to those 18 years and up.

The survey should take approximately 10 to 15 minutes to complete. Participation is completely voluntary, and all responses are confidential. This post and survey sharing have been approved by the Cystic-Fibrosis.com team. Data gathered from this survey will only be presented in aggregate form (for example: “X% of respondents reported…”).

As a thank you, participants who complete the survey will have the option to enter a raffle drawing for one of twenty $50 gift cards.

Survey link: https://redcapconnectt1.archildrens.org/redcap/surveys/?s=XYXH7J4K4R9LHT4A

Thank you for considering participation and for helping contribute to research that may help guide future patient-centered care, education, and discussions within the CF community. Your experiences and perspectives are incredibly important to us.