Prioritizing sexual and reproductive health research and care for people with cystic fibrosis: A 2023 workshop report from the Cystic Fibrosis Foundation Sexual Health, Reproduction, and Gender (SHARING) Research Working Group.
Journal: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society
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Affiliated Institutions:
Department of Pediatrics, University of Pittsburgh School of Medicine, University Center, Lytton Ave, Suite M, Pittsburgh, PA , United States; Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA , United States. Electronic address: traci.kazmerski@chp.edu.
Cystic Fibrosis Foundation, Bethesda, MD , United States. Electronic address: cmoy@cff.org.
Cystic Fibrosis Foundation, Bethesda, MD , United States. Electronic address: ealiaj@cff.org.
Cystic Fibrosis Foundation, Bethesda, MD , United States. Electronic address: jhudson@cff.org.
Patient Partner, SHARING Research Working Group, Bethesda, MD , United States.
National Jewish Health, Jackson St. J Denver, CO , United States. Electronic address: taylorcousarj@njhealth.org.
Massachusetts General Hospital, Fruit St, Yawkey , Boston, MA , United States. Electronic address: ageorgiopoulos@mgh.harvard.edu.
School of Nursing, The University of Alabama at Birmingham, S. nd Ave., NB-A, Birmingham, AL , United States. Electronic address: sladores@uab.edu.
Oregon Health and Sciences University, Southwest Pavilion Loop OHSU Physicians Pavilion, Portland, OR , United States. Electronic address: trimblea@ohsu.edu.
Department of Medicine, Emory University School of Medicine, Woodruff Circle Atlanta, Atlanta, GA, , United States. Electronic address: vin.tangpricha@emory.edu.
University of Washington, NE Pacific St., Seattle, WA , United States. Electronic address: fnkhan@uw.edu.
University of Miami, NW th Street, Miami, FL , United States. Electronic address: ramasamy@miami.edu.
Rutgers Health, Paterson Street Suite New Brunswick, NJ , United States. Electronic address: velezd@rwjms.rutgers.edu.
The Johns Hopkins University, Building th Floor Pulmonary, Baltimore, MD , United States. Electronic address: nwest@jhmi.edu.
Seattle Children's Hospital, Sand Point Way NE, Seattle, WA , United States. Electronic address: rochelle.delossantos@seattlechildrens.org.
Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA , United States. Electronic address: stranskyom@upmc.edu.
National Jewish Health, Jackson St. J Denver, CO , United States. Electronic address: wilsona@njhealth.org.
University of Texas Southwestern, Harry Hines Blvd., Dallas, TX -, United States. Electronic address: ashley.keller@utsouthwestern.edu.
University of Texas Southwestern, Harry Hines Blvd., Dallas, TX -, United States. Electronic address: raksha.jain@utsouthwestern.edu.
Abstract summary
To address sexual and reproductive health (SRH) concerns among people with cystic fibrosis(PwCF), the CF Foundation created the Sexual Health, Reproduction, and Gender Research (SHARING) Working Group. This report summarizes CF community SRH research priorities and workshop discussions/future study planning.Pre-workshop, we distributed a community prioritization survey on CF SRH research/care. During the workshop, we used results and reviewed existing research to establish research priorities and design studies to address identified knowledge gaps.A total of 303 respondents (85 % PwCF, 15 % caregivers) completed the survey. Highly-rated SRH topics were: 1) effects of CF modulator therapy on sex hormones; 2) effects of sex hormones on CF; 3) fertility; 4) pregnancy; and 5) SRH/mental health. Twenty-four workshop participants established the need for further research on sex hormones and CF, optimizing SRH care provision, and fertility/ART.SRH is an important and emerging area in CF and thoughtful consideration of community perspectives can ensure that future research is relevant and responsive.
Authors & Co-authors:
Kazmerski
Moy
Aliaj
Hudson
Wright
Poranski
Sjoberg
Taylor-Cousar
Georgiopoulos
Ladores
Trimble
Tangpricha
Khan
Ramasamy
Leitner
West
Santos
Stransky
Wilson
Keller
Jain
Study Outcome
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