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Volume 2 Feb 2018
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The Cystic Fibrosis Reproductive and Sexual Health Collaborative

CFReSHC Newsletter!

Thank you for taking a few minutes to see what we have been up to! You can read last months issue of the CFReSHC newsletter here.

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.
VOTE ON CFReSHC GOVERNANCE BOARD CHANGES.

VIEW THE SUGGESTED CHANGES HERE.

VOTE AND LEAVE COMMENTS HERE. 
CFReSHC Presentation
On February 8th, Communications Committee Chair Georgia Brown, 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. Georgia and Kelly 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.
ICYMI: Dr. Raksha Jain, from the University of Texas Southwestern, discussed hormones at the Feb. Patient-Task Force meeting.  She presented current theories about how hormones affect women with CF throughout their lives. Her presentation was recorded for those unable to attend.  A link was sent via email to all Patient Task Force members. 
Research Advisory Panel Updates
The February RAP meeting provided a forum for the members to discuss their current research and areas of interest for future research projects. 
  • Traci Kazmerski is a pediatric pulmonologist at Harvard who is interested in SRH in females with CF.  She is developing SRH training for CF teams and developing a screening tool for incontinence.  She hopes to work on a contraception decision aid and reproductive life planning tool. 
  • Sigrid Ladores is a nurse practitioner at UAB who is interested in reproductive health for CFers and is interested in projects that focus on fertility preservation. 
  • Emily Godfrey is a Family Medicine physician at UW, who focuses her research on contraception and fertility in CF.  In the future, she hopes her projects will tackle CF and hormones. 
  • Andrea Roe is an OB/GYN at Penn researches the effects of contraception use in CF. 
  • Courtney Trout is a social worker in NJ who focuses on family planning for CF patients and how to coordinate pregnancy care between the CF clinics and OB/GYNs. 
  • Raksha Jain is CF physician at UT Southwestern who hopes to find out how hormones affect CF patients. 
  • Sandy Suffian, a woman with CF, is a disability historian at the University of Illinois Chicago.  She is interested in hormones especially in the peri-menopause and menopause stage of the CF life cycle.
  • Patricia Walker is a CF physician in NYC who is also interested in the clinical effects of hormones on CF patients to reduce overmedication. 
  • Laurene Tumiel-Berhalter, University of Buffalo, is an epidemiologist and community-engaged researcher who works with people with chronic illness and disability. 
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?
RESULTS FROM THE FEBRUARY PATIENT TASK FORCE MEETING

TOP PREGNANCY RELATED TOPICS
  1. Does hyperstimulation of the ovaries (for IVF fertility treatment) increase CF exacerbations?
  2. Do female sex hormones impact CF women's ability to become pregnant?
  3. Do women with CF feel better during pregnancy, and if so, why?
TOP HORMONAL BIRTH CONTROL RELATED TOPICS
  1. Do women with CF metabolize (absorb) birth control differently than other women?
  2. What are the long-term effects of hormone use on women with CF?
  3. How does hormonal birth control interact with CF medications?
TOP MENOPAUSE RELATED TOPICS
  1. Is it safe/beneficial for women with CF to take hormone replacement therapy during menopause?
  2. Do women with CF enter menopause earlier than women without CF?
TOP THREE OTHER HORMONE RELATED RESEARCH TOPICS
  1. What is the impact of modulator therapies on hormone fluctuations in CF women?
  2. Do periods cause CF exacerbations?
  3. What is the impact of endometriosis on CF symptoms?
Adult women with CF are invited to join the upcoming
CFReSHC Patient Task Force Meeting!
 
The next meeting: March 28 from 2-4 pm EST
TOPIC: Body Image & Quality of Life in CF


Email us at cfreprohealth@gmail.com to get log in details. 
RSVP's appreciated but not required.
CFReSHC Reseachers Working Together on Large Survey of CF Women


Dr. Traci Kazmerski, of the University of Pittsburgh, and Dr. Raksha Jain of the University of Texas Southwestern, are working together on a large survey of adult women with Cystic Fibrosis. Their survey will focus on reproductive and sexual health needs and experiences of women with CF. Survey studies are often a first, important step in the process to answering some of the more complicated research questions proposed by our Patient-Task Force in February. 
Sexual and Reproductive 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.

 

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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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