Cystic fibrosis (CF) is a rare genetic disorder, affecting approximately 30,000 people in the United States, with approximately 1,000 new cases diagnosed annually and a median survival age of 38 years. CF impedes cell chloride channels, which primarily affects the respiratory system, but also the digestive, endocrine, immune, and reproductive systems. Thanks to medical advances, women with CF are increasingly living into their reproductive years, putting pregnancy and pregnancy prevention at the forefront of their daily lives. Despite contraceptive options, approximately 25 percent of pregnancies among women with CF are unplanned. Pregnancy in women with CF has been associated with worsening respiratory function, increased hospitalizations, infections, low birth weight, preterm delivery, diabetes, poor cardiac function, and even death.
We propose engaging CF female patients, CF organizations, primary care clinicians, and medical experts (including those in the fields of CF, family planning, infertility, and maternal fetal medicine) to establish a CF research and advisory panel to improve reproductive lifespan care for patients with CF. We will form a CF patient-driven task force to address reproductive health-related concerns and to develop comparative effectiveness research questions related to reproductive lifespan care for CF patients. Our team has diverse experience, with expertise in primary care, family planning, CF, biostatistics, and computer technology. Through a series of iterative consensus-building community and task force meetings, we will work alongside CF patients and their advocates to strengthen relationships, develop infrastructure, and create valuable channels for communication between patients, CF advocates, researchers, healthcare providers, and other stakeholders.