Continued advancements in therapy and health management have led to dramatic increases in the life expectancy of people with cystic fibrosis. This exciting progress has resulted in an older CF population with unique and emerging needs, including a variety of general and CF-specific issues in the areas of sexual, reproductive, and gender health.
To address these critical issues, the Cystic Fibrosis Foundation recently formed a dedicated research working group to understand the unique interplay of sexual, reproductive, and gender health and CF. The early goals of the Therapeutics Development Network (TDN) Sexual Health, Reproduction, and Gender Research (SHARING) Working Group are to identify the gaps in knowledge around sexual and reproductive health issues, including those in women, men, and transgender and nonbinary people with CF; determine future research priorities; and begin to develop the infrastructure needed to efficiently move these research priorities forward.
Community and Researcher Involvement
Given that sexual, reproductive, and gender health issues are complex and multi-faceted, it is imperative that people with CF be included as key stakeholders. In addition to people with CF being members of the working group, regular interactions with people in the CF community will occur by using such CF Foundation programs as Community Voice. The working group will use this forum to gather insights, identify priorities, and inform the most relevant sexual, reproductive, and gender health research projects to people with CF.
The working group also recognizes that collaboration with other researchers who possess unique expertise is critical to advance our understanding of sexual, reproductive, and gender health in CF. As research priorities are developed, input from specialty experts (e.g., fertility, obstetrics, gynecology, endocrinology, urology, etc.) will be elicited and incorporated into related research protocols.
Working Group Membership
The members of the working group include:
Jennifer L. Taylor-Cousar, MD, MSCS, ATSF Co-Director and CF TDN Director, Adult Cystic Fibrosis Program Professor of Medicine and Pediatrics, Divisions of |
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Raksha Jain, MD, MSCI Director of the Adult Cystic Fibrosis Program Co-Director of the University of Texas Southwestern (UTSW) TDN Associate Professor of Medicine, Division of Pulmonary and Critical Care UTSW Medical Center, Dallas |
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Moira L. Aitken, MD FRCP, Member Professor of Medicine Director of the University of Washington Cystic Fibrosis Program Director of the University of Washington Cystic Fibrosis Division of Pulmonary, Critical Care, and Sleep Medicine University of Washington, Seattle |
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Anna M. Georgiopoulos, MD, Member Assistant Professor of Psychiatry Consulting Psychiatrist, Adult & Pediatric Cystic Fibrosis Programs Massachusetts General Hospital/Harvard Medical School |
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Traci M. Kazmerski, MD, MS, Member Assistant Professor of Pediatrics University of Pittsburgh School of Medicine Division of Adolescent and Young Adult Medicine Pediatric Pulmonologist, UPMC Children's Hospital of Pittsburgh |
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Natalie E. West, MD, MHS, Member Assistant Professor of Medicine, Division of Pulmonary and Critical Care Medicine Associate Program Director, Pulmonary and Critical Care Fellowship Johns Hopkins University, Baltimore |
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Alexandra W. M. Wilson, MS, RDN, CDE, Member Manager, Cystic Fibrosis Registered Dietitian Nutritionist, Certified National Jewish Health, Denver |
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Madeline Poranski, Community member Adult with CF |
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Jacqui Sjoberg, Community member Adult with CF |
For More Information
For more information regarding this initiative and the TDN Women's Health Research Working Group, please contact Dr. Taylor-Cousar at TaylorCousarJ@NJHealth.org.