Studies how parenthood affects health in adults with cystic fibrosis
Tracks physical and mental health of adults with cystic fibrosis who are parents.
Plain-language title generated from the registry record
Registry title: Health Outcomes of Parents With Cystic Fibrosis-Aim 2
Key facts
- Where
- Ann Arbor, Baltimore, Birmingham, Boston, Chapel Hill, Charleston, Dallas, Denver, Evanston, Indianapolis, Kansas City, Minneapolis, Philadelphia, Pittsburgh, Portland, Seattle, and St Louis, United StatesSee the 18 sites
Where in United States
- University of MichiganAnn Arbor, United StatesTaking people
- Johns Hopkins UniversityBaltimore, United StatesTaking people
- University of Alabama BirminghamBirmingham, United StatesTaking people
- Boston Children's Hospital/Brigham and Women's HospitalBoston, United StatesTaking people
- Massachusetts General HospitalBoston, United StatesTaking people
- University of North CarolinaChapel Hill, United StatesTaking people
- Medical University of South CarolinaCharleston, United StatesTaking people
- University of Texas, SouthwesternDallas, United StatesTaking people
- National Jewish HealthDenver, United StatesTaking people
- Northwestern UniversityEvanston, United StatesTaking people
- Indiana UniversityIndianapolis, United StatesTaking people
- University of Kansas Medical CenterKansas City, United StatesTaking people
- University of MinnesotaMinneapolis, United StatesTaking people
- University of PennsylvaniaPhiladelphia, United StatesTaking people
- University of PittsburghPittsburgh, United StatesTaking people
- Oregon Health and Science UniversityPortland, United StatesTaking people
- University of WashingtonSeattle, United StatesTaking people
- Washington University School of MedicineSt Louis, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of Pittsburgh
- Trial code
- NCT06296394
- Record updated
- 7 October 2026
- Original description
The goal of this observational prospective study is to determine the health impact of parenthood on United States (US) people with CF in the era of CF transmembrane regulator protein (CFTR) modulators. The investigators will collect physical and mental health data to comprehensively evaluate the impact of parenthood in CF with widespread highly effective CFTR modulator use. The main hypotheses this study aims to examine are:Read full original descriptionShow less
Health Outcomes of Parents With Cystic Fibrosis-Aim 2
The goal of this observational prospective study is to determine the health impact of parenthood on United States (US) people with CF in the era of CF transmembrane regulator protein (CFTR) modulators. The investigators will collect physical and mental health data to comprehensively evaluate the impact of parenthood in CF with widespread highly effective CFTR modulator use. The main hypotheses this study aims to examine are:
H1: Parents with CF and moderate-to-severe depression have more rapid change in ppFEV1 (percent predicted forced expiratory volume in one second) versus those with mild or no depression.
H2: Parents with CF who have more parental responsibility and/or stress have more rapid ppFEV1 (percent predicted forced expiratory volume in one second) change than those with less responsibility/stress
H3: Parents using CFTR modulators have decreased ppFEV1 (percent predicted forced expiratory volume in one second) change versus those not using CFTR modulators
Participants will complete quarterly surveys during the first year of parenthood and biannual surveys, thereafter, using the computer-based survey system on an iPad protected for infection control or via personal device or computer via emailed survey link.
Inclusion: Diagnosed with cystic fibrosis via sweat test or genotype analysis; Became a first-time parent (including foster parent, step parent, adoptive parent, or legal guardian) to a child under 5 years of age within the last 180 days.
Exclusion: Undergone a lung transplant; Does not speak/read English or Spanish.