Research Into Sexual and Reproductive Health

Caleb Remington with his wife, Tiffany, and their two children.
What Concerns Do People With CF Have?

People with CF have unique concerns related to sexual and reproductive health. These include questions about the following topics and more: 

Puberty: In the past, people with CF often reported delayed puberty compared to their peers. 

Menstrual periods: One in four adult females with CF report that their CF symptoms worsen during their menstrual cycle. Some females with CF may have absent or irregular periods associated with being underweight.

Urinary and fecal incontinence: Frequent coughing can weaken the pelvic floor muscles and lead to incontinence. 

Vaginal health: The thickness and pH balance of vaginal secretions can be affected by a decrease in the number or abnormal function of cystic fibrosis transmembrane conductance regulator (CFTR) channels in the reproductive tract in females with CF. Use of antibiotics and medicines that contain steroids further change the levels of acidity and bacteria in the vagina, which can increase chances of yeast infections. 

Testosterone deficiency: Prior research with adult and adolescent males with CF suggested that they have an increased risk for testosterone deficiency, also known as hypogonadism. The prevalence of hypogonadism in males on CFTR modulators is unknown but is an area of active investigation.

Sex and intimacy: Most people with CF enjoy an active sex life. However, some report frequent coughing during sex and other sexual functioning concerns. Use of sexual positions that put less stress on the lungs and pre-treating with airway clearance can decrease some of these symptoms. People with CF can prevent sexually transmitted infections and pregnancies by practicing safe sex.

Fertility and pregnancy: Most males with CF are infertile, though not sterile (they have sperm but are missing the tubes that carry sperm from the testicles). Most females with CF are fertile, though some have difficulty getting pregnant due to thick, pH imbalanced cervical mucus. As CFTR modulators thin cervical mucus, pregnancies have increased in females with CF. Researchers are looking into how modulators might affect fetal development. Males with CF can have biologic children through assisted reproductive technologies (ART) and research is planned to understand these experiences.

A bar graph showing the increase in pregnancies in people with CF in 2023 compared to 2003
As CFTR modulators thin cervical mucus, pregnancies have increased in females with CF. Source: 2023 Patient Registry Highlights Report


Parenthood: People with CF who become parents report challenges with balancing being a parent and having CF. Early research has shown that new parents with CF experience decreases in their lung function and health. Research is underway to better understand the health impacts of having CF and becoming a parent.

Menopause: More females with CF are reaching this milestone, but little is known how menopause might differ in people with CF relative to the general population. Research is being planned to investigate this topic.

Sex differences in CF: Females with CF historically have worse health outcomes, such as lower life expectancy and more pulmonary exacerbations, than males with CF. Researchers are trying to determine what factors (such as sex hormones) account for these differences.

Sexual orientation and gender identity: Research is underway to determine whether people with CF who are members of the LGBTQIA+ community have different health outcomes. 

What Research Is Underway?

During Plenary 3 of the 2024 North American Cystic Fibrosis Conference, speakers focused on recent advances in reproductive health research, including fertility, pregnancy, and parenthood. 

The Foundation established a research working group to identify knowledge gaps, determine research priorities, and develop the infrastructure needed to move these research priorities forward. The Sexual Health, Reproduction & Gender Research Working Group, known as SHARING, is made up of clinicians, researchers, and CF community members. They partnered with Community Voice to survey people with CF about topics that should be prioritized for sexual and reproductive health research. Priority topics included fertility, pregnancy, ART (such as sperm retrieval and in vitro fertilization), the effects of sex hormones on CF, and sexual functioning.

Several studies are underway: 

  • MAYFLOWERS (Maternal and Fetal Outcomes in the Era of Modulators): This is a study of females with CF who become pregnant either on modulators or not on modulators. Researchers are trying to determine the impact of pregnancy on their health and their child’s health. The study is also looking at the effects of infant exposure to modulators during breastfeeding
  • MATRIARCH (Maternal Infant Reproductive and Child Health in CF): This large United Kingdom study will monitor the physical and mental health of pregnant people with CF — those who take modulators and those who do not — and their infants. It will also look at the effects of infant exposure to modulators during breastfeeding and design strategies to improve reproductive decision making for people with CF.
  • HOPeCF (Health Outcomes of Parents with CF): This study is examining the health impacts of parenthood on people with CF in the era of CFTR modulators. New parents with CF can participate in this study remotely from anywhere in the United States. If you are interested in learning more, please complete this form.  
  • PRIDE CF: Research is underway to determine whether people with CF who are members of the LGBTQIA+ community have poorer health outcomes than other people with CF because of the stress of discrimination and less access to health care. Participation is anonymous and can be completed by anyone in the United States who is eligible. Sign up for the study or subscribe to updates.

The Foundation also is exploring research into whether a fetus that has been diagnosed with CF can benefit if their CF carrier mother starts taking modulators during pregnancy. Although there are several published case studies, more research is needed to understand how safe and effective it is to use modulators during pregnancy to treat a fetus with CF. Because only ivacaftor (Kalydeco) is approved for infants, it is important to understand what will happen after the baby is born and is only receiving modulators through breast milk or not at all. 

Did you know?

Females with CF historically have worse health outcomes, such as lower life expectancy and more pulmonary exacerbations, than males with CF.

Downloads and Related Reading

Foundation Resources

External Resources

  • Cystic Fibrosis Reproductive and Sexual Health Guide: This website provides health guides for adult females with CF. The guides were created by the Cystic Fibrosis Reproductive and Sexual Health Collaborative or CFReSHC.
  • YoungWomensHealth.org: Created by the Center for Young Women's Health, this website features 13 CF-specific reproductive health guides for adolescent and young adult females with CF.
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Topics
CF-Related Complications | Family Planning & Parenting | Fertility and Reproductive Health