Topics I Hope to See Covered at the NACFC

Every year, I look forward to tuning into the North American Cystic Fibrosis Conference (NACFC) to learn more about the newest research and data conducted on cystic fibrosis from around the world. Although some people might believe the conference is tailored to medical providers and the CF care teams, there’s a lot of valuable and uplifting information for patients and families, too.

People can watch presentations and view symposiums through the virtual conference from their smart devices. I know this year’s conference will be an exciting one. Here is a list of certain topics I hope to see covered at this year’s NACFC!

1. Support for parents with CF

As more and more people with CF pursue parenthood, there’s going to be a shift in how treatments and everyday life with CF co-exists with the demands of parenthood. Parents with CF undoubtedly need more resources to help balance their health and caring for families.

Personally, I am interested in what work is being done in this area as it would benefit my own life and a lot of those people who decided to become parents with the help of modulators.

2. Novel treatments coming down the pipeline

It’s always exciting to see what novel treatments are coming down the pipeline and the scientific data detailing the results. I know we will see information about a new combo CFTR modulator and many other possible treatments with hopeful, positive results.

3. Effects of HEMT on children of parents with CF especially in lactation

This is a big one for me, personally.  Many women are choosing to breastfeed while taking Highly Effective Modulator Treatments (HEMT), like Trikafta, using limited data and loose screening guidelines to monitor their babies. I am curious to see if any formal research studies have been done to give parents more data and clarity when choosing to breastfeed.

4. Effects of COVID on overall CF wellbeing

The COVID pandemic was a difficult time for many people, especially those with CF. I am curious to see if any research has been done on how the pandemic affected the mental or physical health of those with CF.

Did the mental or physical health of patients decline because in-clinic appointments were less frequent? Or did telehealth and home monitoring show us that frequent in person appointments aren’t always necessary?

5. Update on CRISPR technology

The genetic editing technique of CRISPR has been a hot topic in the CF community for a while now.  CRISPR is a technique that uses RNA to cut, remove, and add different genes into a living organism.¹ In theory, it is a possible route to correct the CF gene and restore normal function in the body at the genetic level. I hope an update on where we are in CRISPR technology and it’s relationship to CF will be presented to audiences.

6. Research on CF body images issues

Many people with CF have had substantial weight gain since starting HEMT, some more than others. For the first time in CF history, people are having to adjust their diets, change how much they eat, and exercise to control weight gain. This shift in body image has caused a disruption in how people see and think about their body.

I am curious to see if any research studies have looked at the effect of weight gain, body image issues, and HEMT has had on people with CF.

7. Fertility for men with CF

Anecdotally, modulators such as Trikafta have helped many women with CF become pregnant, even ones who were infertile prior to treatment. However, sadly, the cause of infertility for men with CF cannot be helped by modulators since they are born with it.

My hope is that there’s research being done surrounding infertility for men with CF to help CF care teams better understand what kinds of support is most needed for this group.

Do you plan to tune into the NACFC? What important topic do you hope to learn more about? Share with us below!