Help shape guidelines in this new CFTR modulator era

The researchers are calling for people with CF and their partners to help create these guidelines using a series of surveys. Those wanting to take part will be asked to commit to a maximum of three online surveys over approximately a three-month period. Each survey will have 38 ‘agree or disagree’ questions and take around 20 minutes to complete. 

If you are interested, please continue reading! 

What is currently known about CFTR modulator use during pregnancy?

In recent years, access to modulators has increased the number of people with CF having children. The UK CF Registry report shows that in 2020, 56 women with CF had babies, though since 2021, these numbers have risen to over 100 every year.

As women with CF were not eligible to take part in the CFTR modulator studies, what we currently know about the safety is based only on small and limited studies. Researchers know that the medication does reach the baby during pregnancy and is also present within breast milk. Currently little is known about the impact of these medicines during pregnancy and breastfeeding.

What will the survey be used for?

The insights from your responses will be used to create a guideline for managing the health of babies and children exposed to CFTR modulators during pregnancy and through breast feeding, which reflect what is important to you and your family. 

Those taking part can choose to be listed as collaborating authors in any resulting publications. 

How do I sign up?

If you would like to join, please email Idan Bokobza with your name, the country you live in, and if you are a person with CF or their partner. If you are interested, you will receive an email which includes further information and a participant information sheet. If you would still like to take part, you will then receive an email with a link to the survey.