TY - JOUR
T1 - Prioritizing sexual and reproductive health research and care for people with cystic fibrosis
T2 - A 2023 workshop report from the Cystic Fibrosis Foundation Sexual Health, Reproduction, and Gender (SHARING) Research Working Group
AU - Kazmerski, Traci M.
AU - Moy, Christie
AU - Aliaj, Enid
AU - Hudson, Jessica
AU - Wright, Brandon
AU - Poranski, Maddie
AU - Sjoberg, Jacqui
AU - Taylor-Cousar, Jennifer L.
AU - Georgiopoulos, Anna M.
AU - Ladores, Sigrid L.
AU - Trimble, Aaron
AU - Tangpricha, Vin
AU - Khan, Farah Naz
AU - Ramasamy, Ranjith
AU - Leitner, Danielle Velez
AU - West, Natalie E.
AU - Santos, Rochelle Delos
AU - Stransky, Olivia M.
AU - Wilson, Alexandra
AU - Keller, Ashley
AU - Jain, Raksha
N1 - Publisher Copyright:
© 2024 European Cystic Fibrosis Society
PY - 2024
Y1 - 2024
N2 - Background: 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. Methods: 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. Results: 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. Conclusion: SRH is an important and emerging area in CF and thoughtful consideration of community perspectives can ensure that future research is relevant and responsive.
AB - Background: 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. Methods: 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. Results: 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. Conclusion: SRH is an important and emerging area in CF and thoughtful consideration of community perspectives can ensure that future research is relevant and responsive.
KW - Community-engaged research
KW - Cystic fibrosis
KW - Sexual and reproductive health
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U2 - 10.1016/j.jcf.2024.03.007
DO - 10.1016/j.jcf.2024.03.007
M3 - Review article
C2 - 38485603
AN - SCOPUS:85188008683
SN - 1569-1993
JO - Journal of Cystic Fibrosis
JF - Journal of Cystic Fibrosis
ER -