Newsletter: Volume 1

Governance Board Updates

The Governance Board (GB) met on January 5, 2018 with nine members present. Subcommittee updates were first on the agenda. The Governance Board has three subcommittees: Group Norms, Meeting Planning and Communications.

The Communications committee is focusing on ways to announce upcoming meetings. CFReSHC will post items on Social Media outlets: Facebook, Twitter and Instagram. In addition, we will try and partner with other organizations like the Cystic Fibrosis Research Institute, CF Roundtable, Rock CF and the Cystic Fibrosis Lifestyle Foundation to announce upcoming meetings. We will also start distributing this monthly newsletter to all CFReSHC members and others who are interested in our work.

The Meeting Planning committee discussed ideas for the January Patient Task Force (PTF) meeting and decided that patients should give feedback on two grant proposals during the upcoming PTF meeting. In addition, members discussed having the Research Advisory Panel (RAP) meetings after the PTF meetings to ensure the timely feedback from women with CF on focus topics.

For the rest of the meeting, the Group Norms subcommittee presented amendments to the CFReSHC Governance document. This is a set of guidelines used by members to conduct CFReSHC business. Proposals were made in the following sections: meeting facilitation roles, conference attendance guidelines, meeting absence protocols, subcommittee chair selections, active involvement in CFReSHC, communication between groups and member compensation. A poll was conducted after the meeting via email and all of the initiatives passed with 100% support. The remaining document items will be discussed at future GB meetings.

CFReSHC is comprised of 3 groups that meet monthly to help shape the future of Reproductive and Sexual Health research for women with CF. Women with CF attend and actively participate in every meeting.
Research Advisory Panel Updates
The Research Advisory Panel (RAP) is comprised of 6 researchers interested in the Sexual & Reproductive Health of women with CF. Presently, we have two clinician-scientists, two Ph.D. researchers, one social worker and one nurse researcher. This group reviews the feedback from the Patient Task Force meetings to formulate future research studies.

The January RAP meeting focused on the two grant proposals being developed by CFReSHC. One grant focuses on Contraception and CF and the other on facilitating Patient-Centered Outcomes Research (PCOR). Attendees were able to review the letters of intent (LOI) to better understand the grant requirements and the goal of each project.

Molly Pam, Chair of the Meeting Planning Subcommittee, provided an overview of the discussions from the “Research 101” PFT meeting.

Kelly Gilmore, MPH discussed feedback about the Patient-Centered Outcomes Research grant.

Dr. Emily Godfrey relayed the input she received about the contraception and CF grant. The attendees then discussed methods for conducting a study to assess how contraception positively or negatively impacts women with CF.

January Patient Task Force Summary

The Patient Task Force is comprised of women with CF interested in shaping the future of Sexual and Reproductive Health for the CF Community. The meeting is held on different days at different times each month to accommodate people in every time zone. Every month, CF attendees can share their opinions on the focus topic and can receive a $25 Amazon gift card for their time.

The January PTF meeting focused on CFReSHC’s grant applications for possible future funding sources. After a quick overview of the CFReSHC organizational structure (see chart above), a summary of research grant application procedures was offered to ensure attendees understood the steps involved in applying for grants. Then, Kelly Gilmore, MPH presented a grant proposal to expand CFReSHC’s ability to train patients as research partners. Dr. Emily Godfrey worked with three women with CF, who are also members of the Governance Board, to write this preliminary grant proposal. The award will provide funding to continue fostering patient-engagement and input in CFReSHC research. Next, Dr. Emily Godfrey presented a research proposal that would investigate how birth control hormones impact CF symptoms in women. Afterward, attendees broke into two small groups to ask questions and to provide feedback on the grant proposals, which were due February 1st.

Thank you for being an engaged member of our collaborative! Our group is strong and valuable because of continued input from patients and researchers like you. We are truly grateful for the opportunity to work as a group, to inspire positive changes in the CF community!
Adult women with CF are invited to join the upcoming
CFReSHC Patient Task Force Meeting!

The next meeting: Feb 22 from 11-1 pm EST
TOPIC: How Hormones Effect Women with CF from
Puberty to Menopause

Email us at cfreprohealth@gmail.com to get log in details.
RSVP’s appreciated but not required.
The Future of CFReSHC Funding
Thanks to all the women with CF who have given hours of their time to help us understand their sexual and reproductive health concerns. As a result of your input, we are working on grant submissions related to care coordination between CF clinics and OB/GYN physicians, as well as a submission to understand how hormonal birth control methods may affect CF symptoms. We will continue to collect your ideas and priorities and shape them into research projects to address your sexual and reproductive health questions.

As many of you know, the funding source we rely on to sustain our collaborative was cut starting in August 2018. While that was a disheartening setback, we are very committed to seeking new funding sources to maintain and expand CFReSHC in 2018 and beyond. One funding source we are pursuing is the Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). We recognize that having women with CF engaged as equal partners on our research team is crucial for conducting high-quality research on sexual and reproductive health topics that are important to women with CF. The Eugene Washington Award would allow us to get women with CF and researchers trained to work effectively on research teams together. It is our hope that this effort would not only benefit our collaborative but other types of research that are important to CF patients. We will know if we were accepted to apply for this award sometime in March. There is another opportunity to apply this June.

As we look towards the future, we are all very committed to keeping this work alive. We will continue to pursue funding sources to support both research and the governance board and patient task force, which are crucial in guiding our work. New funding sources often mean we have to make changes to our activities, but we are hopeful that we can adapt to any new funding requirements in a way that serves the overall mission of our collaborative.

Reproductive and Sexual Health Research from CFReSHC Collaborators!

Kazmerski TM, Sawicki GS, Miller E, et al. Sexual and reproductive health care utilization and preferences reported by young women with cystic fibrosis. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. 2018;17(1):64-70.

Kazmerski TM, Sawicki GS, Miller E, et al. Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. 2018;17(1):57-63.

Heltshe SL, Taylor-Cousar JL. Let’s talk about sex: Behaviors, experience and health care utilization in young women with CF. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. 2018;17(1):5-6.

Heltshe SL, Godfrey EM, Josephy T, Aitken ML, Taylor-Cousar JL. Pregnancy among cystic fibrosis women in the era of CFTR modulators. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. 2017;16(6):687-694.

Kazmerski TM, Tuchman LK, Borrero S, et al. Cystic fibrosis program directors’ attitudes toward sexual and reproductive health in young women with CF. Pediatric pulmonology. 2016;51(1):22-27.

Kazmerski TM, Borrero S, Tuchman LK, et al. Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis. Pediatrics. 2016;137(6).

Kazmerski TM, Gmelin T, Slocum B, Borrero S, Miller E. Attitudes and Decision Making Related to Pregnancy Among Young Women with Cystic Fibrosis. Maternal and child health journal. 2016.