CFReSHC is a collaborative of patients and researchers working together to research sexual and reproductive health in women with cystic fibrosis (CF).
Our Mission is to complete patient-engaged research through partnerships with people with CF, researchers, and advocates. Our research will respond to the health needs of the CF community, provide data for healthcare professionals, and ultimately pave the way for improved reproductive and sexual health resources, healthcare, and knowledge for people with CF.
How we are different:
Typically, researchers develop research questions, solicit funding and conduct research without patient input. CFReSHC uses the principles of patient-engaged outcomes research (PCOR), where women with CF are active participants throughout the entire research process: from identifying research priorities and questions, to participating in project design and grant writing to study implementation and dissemination.
We are composed of three arms that work together to complete our research:
The Governance Board is a group of patients and researchers who steer CFReSHC and make strategic decisions about the future of the collaboration and project. This group is in charge of handling recruitment strategies, communication between groups, delegation of tasks and development of CER questions. It is comprised of members of the CF Patient Task Force (CF-PTF) and Research Advisory Panel (RAP). The board is comprised of four sub-committees: The Communications Committee, the Meeting Planning Committee, the Group Norms and Governance Committee, and the Grants committee
The PTF is comprised only of people with cystic fibrosis. It meets monthly to hear expert speakers talk about specific subjects relating to the reproductive and sexual health of people with CF, discuss these topics, and brainstorm future research questions about reproductive and sexual health relating to the topic.
RAP is a group of researchers responsible for developing and executing research proposals from the patient priorities of the PTF, and for providing technical expertise and feedback on any future PCORI grants and research protocols that arise from this initiative.
Who We Are
Emily M. Godfrey, MD MPH is an Associate Professor in the Departments of Family Medicine and Obstetrics and Gynecology at the University of Washington (UW). She is a family physician, with a clinical focus on family planning and outpatient women’s healthcare. She is a core faculty member of the University of Washington Family Medicine Research Section whose research efforts include improving sexual and reproductive health for women living with chronic and complex medical conditions. Dr. Godfrey is a patient-centered outcomes-based researcher whose current work focuses on reproductive health for women with cystic fibrosis and developing new modalities to improve the quality of patient-informed contraceptive care delivered in the clinical setting. She is the Co-founder and current Lead of the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC). Dr. Godfrey earned her undergraduate degree from the University of Wisconsin-Madison and holds a Medical Degree from the Medical College of Wisconsin. She completed a family medicine residency at the West Suburban Medical Center in Oak Park, Illinois. She is a graduate of the Fellowship in Family Planning and holds a Master of Public Health Degree from the University of Rochester. She is a member of the expert committee on the Centers for Disease Control and Prevention Division of Reproductive Health U.S. Medical Eligibility Criteria for Contraceptive use, and a member of the World Health Organization guideline development group for sexuality-related communication. Dr. Godfrey has published dozens of articles related to family planning and is a fellow of the American Academy of Family Physicians and of the Society of Family Planning.
Sandy Sufian, PhD, MPH, is a woman with CF and the Co-Founder of CFReSHC. She is Associate Professor of Health Humanities and History in the Department of Medical Education (College of Medicine) and of Disability Studies in the Department of Disability and Human Development (College of Applied Health Sciences) at University of Illinois-Chicago. She is an affiliated faculty member in the History Department and the School of Public Health. Dr. Sufian is a national expert on disability experience, illness experience and healthcare. She has training in history, public health, and health services research. She has written two books, is working on a third, and has written numerous articles. She is also the Principal Investigator of a two year National Endowment for the Humanities grant that builds health humanities cases for physicians in training. Dr. Sufian has been interested in women’s sexual and reproductive issues and their interaction with CF for over 20 years and inspired the idea, through conversations with Emily Godfrey, for this CFReSHC work. Sandy is the Principal Investigator of the CFF Impact Award grant developing new PTF sessions and the CFReSHC website. She is also the lead on the CFReSHC hormone workgroup. In addition, Sandy is an elected member of the Patient-Centered Outcomes Research Institute’s (PCORI) Patient Engagement Advisory Panel, a national panel that advises PCORI on patient engagement policies and practices. She is also a PCORI Ambassador.
We also have a rotating team of Governance Board members comprised of patients, researchers, and clinicians, and Patient Task Force Leadership Committee members who serve as lead chapter writers for our CF-Sexual and Reproductive Health Guide for Patients and Providers. If you’re interested in lending your expertise to our mission, please submit an inquiry below.