We envision a time when all people with cystic fibrosis (CF) experience optimal reproductive and sexual health.
CFReSHC is committed to patient-engaged research through partnerships with people with CF, researchers, and advocates. Our research will respond to the health needs of the CF community, and provide data for healthcare professionals, ultimately to pave the way for improved reproductive and sexual health resources, healthcare, and knowledge for people with CF.
To achieve this purpose, the CFReSHC will:
- Meet regularly to discuss issues related to reproductive and sexual health
- Take action in between discussions to meet CFReSHC goals
- Strive for inclusivity in group membership and in soliciting community feedback
- Respect the expertise of patients, doctors, nurses, social workers, staff, advocates, families, researchers and other team members, recognizing the unique perspective that each group brings to understanding the patient experience and reproductive and sexual health issues.
- Prioritize the voices of the CF community in all research and action decisions
- Communicate progress and results to the greater CF community
How is CFReSHC 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.
What do we do?
Our Patient Task Force meets monthly, using an online video conferencing platform, to discuss women’s health issues. Our Research Advisory Panel meets monthly to translate patient concerns, priorities and questions into new research studies.
Why are we doing it?
It has become even more critical to research the sexual and reproductive health needs of adult women with CF as more than half of CF patients now live into adulthood. Women with CF now worry about family building, the interplay between female sex hormones and CF symptoms, incontinence, body image and, even, menopause.
What can you do?
CFReSHC has started a fund based at the University of Washington to help defer the costs associated with our operations with the goal of ultimately improving the lives of women with CF. Find out how to donate here. If you would like to learn more about joining the Governance Board, Patient Task Force, or for more general information, please contact firstname.lastname@example.org