TDN Women's Health Research Working Group

To address the unique and emerging needs of women with cystic fibrosis, the Cystic Fibrosis Foundation has established a research working group to identify knowledge gaps, determine research priorities, and develop the infrastructure needed to conduct the research.

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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 women with CF who are experiencing a variety of general and CF-specific health issues.

To address these critical issues, the Cystic Fibrosis Foundation recently formed a dedicated research working group to understand the unique interplay between how a woman experiences CF and how having CF impacts the decisions a woman makes. The early goals of the Therapeutics Development Network (TDN) Women's Health Research Working Group are to identify the gaps in knowledge around CF women's health issues, determine future research priorities, and begin to develop the infrastructure needed to efficiently move these research priorities forward. 

Community and Researcher Involvement 

Given that women's health issues are complex and multi-faceted, it is imperative that women with CF be included as key stakeholders. In addition to a woman with CF being a member of the working group, regular interactions with women 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 research projects to women with CF. 

The working group also recognizes that collaboration with other researchers who possess unique expertise is critical to advance our understanding of CF women's health. As research priorities are developed, input from specialty experts (e.g., fertility, obstetrics, gynecology, endocrinology, etc.) will be elicited and incorporated into related research protocols.

Working Group Membership

The members of the working group include:

Jennifer Taylor-Cousar Headshot

Jennifer L. Taylor-Cousar, MD, MSCS, ATSF
Chair

Co-Director and CF TDN Director, Adult Cystic Fibrosis Program

Professor of Medicine and Pediatrics, Divisions of Pulmonary, Critical Care, and Sleep Medicine, and Pediatric Pulmonary Medicine, National Jewish Health, Denver

Raksha Jain Headshot

Raksha Jain, MD, MSCI
Vice chair

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

Moira Aitken Headshot

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 Therapeutic Development Center 

Division of Pulmonary, Critical Care, and Sleep Medicine

University of Washington, Seattle

Traci Kazmerski Headshot

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

Natalie West Headshot

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

Alexandra Wilson Headshot

Alexandra W. M. Wilson, MS, RDN, CDE, Member

Manager, Cystic Fibrosis Clinical Research

Registered Dietitian Nutritionist, Certified Diabetes Educator

National Jewish Health, Denver

Madeline Poranski Headshot

Madeline Poranski, Community member

Adult with CF

Jacqui Sjoberg Headshot

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

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Research Priorities in the Health of Women With CF for 2021 RFA Download (PDF)
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