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 L. Taylor-Cousar, MD, MSCS, ATSF
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, 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
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 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 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 W. M. Wilson, MS, RDN, CDE, Member
Manager, Cystic Fibrosis Clinical Research
Registered Dietitian Nutritionist, Certified Diabetes Educator
National Jewish Health, Denver
Madeline Poranski, Community member
Adult with CF
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.