Newsletter: Volume 6

Governance Board Updates

CFReSHC offers women with CF the opportunity to participate on the Governance Board, Research Advisory Panel and Patient Task Force as Patient Partners to develop research projects that directly respond to the questions faced by women with CF. As we enter our third year, CFReSHC is looking for women with CF who are passionate about sexual and reproductive health research to join our collaborative who can commit 4-6 hours a month. We provide a small honorarium for your time commitment.

Due to the CFReSHC SUCCESSES using Patient Centered Outcomes Research (PCOR) methods, we are expanding our patient-engaged methods to the greater CF community to create an online training program for CF patients, clinicians and researchers. PCOR provides an opportunity for CF patients to work as equal partners with clinicians and researchers to conduct research that addresses knowledge gaps. CFReSHC is extending an invitation to CF patients, providers and researchers interested in responding to an online needs assessment survey and participating in a 2-hour online discussion group. Compensation is provided.

If you are interested in more information on our programs, please email us at info@CFReSHC.org.

 

Research Advisory Panel Updates

When we conducted our Spring 2018 survey, several respondents inquired about what we do with the information we collect at PTF meetings. After each PTF meeting, we offer PTF members the opportunity to vote on potential research questions. We take these top 3 priority areas and present them to our Research Advisory Panel (RAP) which is comprised of CF clinicians and researchers. Then our RAP members discuss ways to turn each question into an actual research study. One of the topics addressed last year was the potential correlation between female sex hormones and CF symptoms. To date, Sandy Sufian has applied for two grants in hopes of conducting a research study where women with CF monitor their daily symptoms with an phone application. We recently learned that one grant application was denied and the other is pending. If we receive funding for this project, it will be a novel way to identify when, how severe and which CF symptoms occur during the menstrual cycle.

We have also divided our RAP into 4 working groups: reproductive decision making, incontinence, menopause and hormones. Within each work group, members are meeting regularly to narrow their focus and to pursuing funding opportunities.