Volume 8 Jan 2019
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CFReSHC Newsletter!

Thank you for taking a few minutes to keep up to date on our activities.
Did you miss last month's newsletter?  Find it HERE

Governance Board Updates
We are pleased to announce two new members joined the CFReSHC Governance Board!  Melissa Shiffman is a patient partner and recipient of the 2018 Alex Award.  While working as National Advocacy Co-Chair for the CF Foundation, she spearheaded advocacy campaigns that supported people with CF and made sure elected officials were aware of the needs of the CF community.  Melissa will be working on the Communications Sub Committee helping expand CFReSHC's social media presence.  Elinor Schwind is a genetic counselor at Mount Sinai Beth Isreal in New York.  She supervises the clinical training of genetic counseling students from Icahn School of Medicine at Mount Sinai and she serves as a lecturer and thesis adviser for CF-related research projects from Sarah Lawrence College Genetic Counseling Program.  Elinor will join the Governance/Norms subcommittee.

During the January meeting, members discussed current research priorities and projects.  Clinicians within the group are actively submitting letters of intent and grant proposals that address the sexual & reproductive concerns encountered by women on our Patient Task Force.  CFReSHC's goal is to have more women with CF take part in the grant process to ensure that CFReSHC maintains its focus on patient-engaged research.  One way to do this is to have grant committees that include women with CF to ensure patient engagement in every step of the process.  This will be discussed at a future meeting.
Research Advisory Panel Updates
RAP meetings are an opportunity to share an overview of PTF meetings.  This month, PTF member, Megan Lepore, attended to give an overview of the meeting on modulators and SRH.  She pointed out that modulators are extending lives and women with CF would like to discuss how that affects their SRH during clinic visits with team members.  She even suggested that maybe women's well visits could be incorporated into clinic visits to help women better understand the impacts of modulators on their reproductive options and sexual health throughout life's phases.  She listed the research priorities provided during the meeting and highlighted the top three research questions selected by PTF members.

RAP members then discussed expanding the focus of PTF meetings beyond sexual and reproductive health to include the broader subject of women's health.  This would provide a wider scope of topics for women with CF to explore while expanding CFReSHC's ability to apply for a variety of grants.  

One member from each of the four work groups provided a progress report.  The goal is for each group to develop a project or submit a grant letter of intent by June.  Current groups are addressing: incontinence, menopause, hormones and family planning.  The hormones group plans to submit a grant application by June.  The incontinence group is hoping to develop a training guide for CF centers on how to discus incontinence at clinic.  The menopause group will be meeting in February to proceed with a literature review.  The family planning group is designing a patient guide and seeking funding for supplemental costs.
ICYMI: Jennifer Taylor-Cousar discussed the affects of MODULATORS on sexual health.  Click the image to watch the video of her presentation.   
PTF Meeting Overview
On January 3, Dr. Jennifer Taylor-Cousar discussed her research focusing on the use of modulators during pregnancy.  Fertility in women with CF is impacted by thick cervical mucus, delayed puberty and ovulation and sub optimal nutritional status.  CF Pregnancy complications include: diabetes, pulmonary exacerbation, medication side effects and preterm labor.  Yet, the desire for women with CF to get pregnant is increasing and the pregnancy rates for women with CF is increasing. 

Modulators are having an impact. Some women on Orkambi experience changes in their menstrual cycles.  Some women on Kalydeco experienced problems finding approved contraception methods. Some women who started modulators found it easier to conceive. 

Pregnancy outcomes for women with CF on modulators and their infants are being conducted.  However, no human trails have been conducted to evaluate the effects of modulators on infants during pregnancy or during breastfeeding.  Therefore, prospective studies in pregnant women with CF are needed.

Dr Taylor-Cousar did acknowledge problems women faced when they opted to stop modulators.  Stopping modulators seemed to find patients experiencing health declines below baseline.  

During the break out sessions, women on modulators offered some physical changes they have noticed such as: easier pelvic exams with thinner cervical mucus, one modulator did not make it easier for them to get pregnant and more regular menstruation cycles.  Women also wondered about the long term side effects of taking modulators.

Women who voted on the post PTF poll selected these three research areas:
  • What is the toxicity of modulators on pregnancy? Breastfed infants? It is safe?
  • How do modulators affect female sex hormones levels?
  • How do modulators influence menstrual cycles? Affect menopause?

The next PTF meeting titled, "Vaginal Health and CF" will be held Saturday February 23, 2019 from 3-5 EST.  Dr. Susie Baldwin, a CF patient, transplant recipient and cancer survivor, works as a Public Health and Preventive Medicine physician.  Her career has focused on sexual and reproductive health and women’s health.  She will discuss topics faced by women with CF such as STIs, vaginal infections and cervical mucus from her personal and professional experience.

Join our private Facebook page!  Email us at:!
We used part of the funds from the CFF Impact Grant to develop a CFReSHC website.  On the website you can find: background information, member bios, meeting details, past presentation videos, previous newsletters and more!  Check out our new website! 
Patient Task Force Meetings

CFReSHC holds monthly Patient Task Force (PTF) meetings to provide women with CF an opportunity to discuss sexual and reproductive health (SRH) issues. The goal of the meetings is to highlight YOUR experiences and YOUR questions and to identify YOUR priorities for future research.  We select focus topics based on poll results and we try not to repeat topics to ensure that we cover a diverse set of topics.

Each meeting starts with a researcher discussing their research on a selected topic.  While the researcher may focus on one aspect of the topic, PTF meetings are meant to cover the entire focus topic.  If you are not interested in the specific presentation, we welcome you to attend the second hour, CF only group discussion and brainstorming session.

Monthly Meeting Format:

1st hour:  Introductions & Researcher presentation with Q/A

2nd hour:  Brainstorming session & Identification of research priorities/questions

At the end of the meeting, attendees vote for the three research questions they feel are the most important.  After each meeting, CFReSHC sends out an email with a recording of just the presenter’s presentation and the poll for women who could not attend the meeting so that all PTF members can give their input on CF-SRH research agendas.

PTF meetings provide a forum for women with CF to learn from each other and to share in a collaborative environment.  Attendees can contribute to the discussion in valuable ways with their personal stories and innovative ideas, even when they are not personally affected by the focus topic. Active participation is the key to our success; we encourage every PTF member to vote on priority areas to ensure we submit the best, potential research ideas to our CFReSHC Research Advisory Panel.

Members can also get more involved in PTF meetings. We are offering training for PTF members to participate as note takers and facilitators.  Breakout facilitators receive a $30 gift card and note takers get a $20 gift card. Attendees receive a $15 gift card. If you are interested in being more involved in the PTF, please email us at  

Grant Updates
Members of CFReSHC, are working on a variety of grants and/or grant applications.  Our goal is to remain current on presenting grant status updates and research findings to better inform our members about ongoing CFReSHC research activities. 

CF and Hormones
Sandy Sufian submitted a grant to the Portes Foundation to conduct a study tracking CF symptoms.  Unfortunately, CFReSHC did not receive the $50,000.  CFReSHC members are actively perusing other grant opportunities for this research project.

PCORI Eugene Washing Grant
The goal with the EWA is to bring patient-engaged research to the CF Community.  This is a multi-step process that will take two years to complete. 

The first step was a needs assessment survey conducted last year. We asked participants what should be included in a PCOR training program.  We received feedback from 170 members of the CF community.  We used this information to formulate questions for discussion groups held in January.  

We completed 3 World Cafe format discussion sessions and received feedback from 24 individuals (people with CF, caregivers/parents, researchers and providers). Participants felt the following topics were important to include in a PCOR training program:
  • Engaging a representative group of patients
  • Establishing and maintaining trust between participants
  • Creating a shared language that all participants understand (avoiding lingo/jargon)
  • Explain how engaging patients benefits research
  • Demonstrate what patient-engaged research looks like
  • Illustrate how patients can help researchers understand the problem or develop research questions
Participants preferred an online training program that utilized a variety of training formats (webinars, self-directed learning, and a series of interactive sessions). Findings indicated that a variety of sessions should be included such as: separate sessions for patients, caregivers, providers and researchers and then sessions combining the groups to provide modules on how to develop equal partnerships.  

Next, we will adapt existing PCOR training programs to meet the guidelines established in our needs assessment sessions and survey.

CFF Impact Grant
CFReSHC has two aims under the CFF Impact Grant: to conduct Patient Task Force meetings and to build a CFReSHC website.  The website is nearly completed and three PTF meetings have been held thus far.  PTF meetings provide a forum for women with CF to share their personal stories and experiences on SRH issues while also providing the Research Advisory Panel with research priorities and research questions.  CFReSHC will apply for another CFF Impact Grant for next year in June.
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Cystic Fibrosis Reproductive and Sexual Health Collaborative · 1959 NE Pacific St · Box 356460 · Seattle, Washington 98195 · USA

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