Newsletter: Volume 2

Governance Board Updates

The Governance Board (GB) met on February 2nd, 2018. We discussed group norms, subcommittee updates, and voted on changes to our governance document. In our group norms discussion, we chose to make the following changes 1) use less technical language and make room at all meetings to ensure everyone understands what is being said and has an opportunity to ask questions 2) develop more mechanisms to collect feedback from all CFReSHC members and 3) transition all of our Governance Board communication to Slack versus email. Our sub-committees gave the following updates: The Meeting Planning Committee announced March meeting topics and dates. The Communications committee announced the newsletter as a new way to improve CFReSHC communications and talked about focusing on keeping current CFReSHC members engaged instead of looking for new members while our future funding situation is still unclear. The Governance Committee outlined updates to the governance document including definitions for sub-committee chair roles, onboarding processes for new CFReSHC Governance Board members, and specifics on compensation and active involvement. The Governance Board voted to accept all changes, and now it’s your turn. We would love your feedback on the Governance Document.

On February 8th, the Communications Committee Chair, and Communications Committee member, Kelly Gilmore were invited by our technical assistance office provide a presentation about our collaborative to other Patient-Centered Outcomes Research Institute Pipeline to Proposal awardees. They presented the CFReSHC research idea generation process as seen below, as well as methods we use to engage patients in every step of our research generation process.

February Patient Task Force Summary

At the February Patient-Task Force meeting, we heard from Dr. Raksha Jain at the University of Texas Southwestern. Dr. Jain outlined what is and is not known about how hormones impact CF symptoms for women across the lifespan. For example, women tend to colonize pseudomonous at an earlier age and tend to have more exacerbations post puberty than men. Interestingly, hormones could play a factor in this discrepancy.

Studies in this area have been limited with small sample sizes and routine data collected each time a woman attends her CF clinic. Yet, the few studies have shown some interesting tidbits of information. For example, estrogen can impact the expression of CFTR. Surprisingly, female mice with CFTR given estrogen produced more pseudomonous infections. Plus, estrogen seemed to increase inflammation in female subjects. Clearly, this information furthers the speculation that hormones can impact female CF patients.

Presently, Dr. Jain is looking at the roles estrogen and progesterone might have in women with CF. Dr Jain is conducting study of women taking contraception. So far 20 women are participating in the initial phase. Dr. Jain discussed her preliminary results. She then said that while the number of pregnancies by CF women has increased there is still little known about the effects of pregnancy other than increased care is required. Unfortunately, very little is known about menopause in women with CF primarily from lack of sample size.

After the presentation, participants broke into two groups to discuss the areas patients feel need further research. Then, they voted for their top three research priority areas in each category (see below). Contact us if you would like to view the full presentation to learn more about hormones across the lifespan for women with CF.
Poll Results from PTF
What questions do women with CF have about hormones?

Does hyperstimulation of the ovaries (for IVF fertility treatment) increase CF exacerbations?
Do female sex hormones impact CF women’s ability to become pregnant?
Do women with CF feel better during pregnancy, and if so, why?
Do women with CF metabolize (absorb) birth control differently than other women?
What are the long-term effects of hormone use on women with CF?
How does hormonal birth control interact with CF medications?
Is it safe/beneficial for women with CF to take hormone replacement therapy during menopause?
Do women with CF enter menopause earlier than women without CF?
What is the impact of modulator therapies on hormone fluctuations in CF women?
Do periods cause CF exacerbations?
What is the impact of endometriosis on CF symptoms?

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