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Volume 12 Summer 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 welcome two new members to the CFReSHC Governance Board: Pat Walker, MD and Leigh Ann Bray, PhD.

Pat is an adult pulmonologist and Co-Director of Mount Sinai Beth Israel's Cystic Fibrosis Center in New York, which is part of the CF Therapeutic Development Network. Her team conducts cutting edge research for potential CF treatments and her multidisciplinary CF team uses an integrative approach to CF clinical care. Pat has served on the CFReSHC Research Advisory Panel for three years and she is the clinical advisor for a CFF-funded IMPACT award.  

Some of you may remember Leigh Ann Bray from her enlightening discussion on body image in 2018. After spending time as a bedside nurse of CF patients, she opted to earn her PhD to improve the lives of those living with CF. An assistant professor at the University of Alabama Birmingham School of Nursing, Leigh Ann received a pilot grant to look deeper into body image concerns faced by patients. 
 
The CFReSHC Governance Board (GB) did not take the summer off! We were hard at work applying for grants, attending conferences and submitting conference poster abstracts.

Emily Godfrey and Georgia Brown attended the CFRI conference "Charting the CF Course" in Redwood City, California at the end of July. Former GB member, Traci Kazmerski, presented "Let's Talk About Sex: Improving Sexual & Reproductive Health Care in CF." Visit: www.cfri.org to watch the 2019 conference presentations. Georgia also attended the week long CFRI Retreat in Menlo Park, California. She facilitated a session on CF-SRH for women with CF who attended. 

In September, GB members Sandy Sufian, Emily Godfrey and Georgia Brown attended the Patient Centered Outcomes Research Institute's (PCORI) annual conference in Washington, DC. They attended plenary sessions and viewed posters presented by other PCORI projects. Emily met with politicians on Capitol Hill to advocate for renewed funding for PCORI in the upcoming congressional budget.

GB members have two more conferences planned for this year: one in Los Angeles, California and one in Toronto, Canada. Look at future newsletters for details
.   
Research Advisory Panel Updates
The Research Advisory Panel (RAP) was on hiatus over the summer. The RAP is comprised of clinical and social science researchers, health care providers, geneticists and advocacy members in both the CF and reproductive health communities. Our collaborative volunteers meet every other month to listen to updates from patient-partners on the Patient Task Force (PTF) meetings. With that information, the RAP then develop research studies that address the concerns of women with CF. Members of the PTF have prioritized over 60 potential research questions on topics such as incontinence, body image, sexual pain and menopause for translation into research projects. 

CFReSHC is actively recruiting researchers interested in forwarding new avenues of CF-Sexual and Reproductive Health (SRH) research. CFReSHC is committed to utilizing patient-engagement principles in our work. For more information, contact us at: info@cfreshc.org.
Grant Updates
Members of CFReSHC are working on a variety of grants and/or grant applications. However, we have not received additional funding to date. Our goal is to remain current on presenting grant status updates and research findings to better inform our members about ongoing CFReSHC research activities. The Governance Board added a "Grant Writing" subcommittee to help with securing future funding.

PCORI Eugene Washington Grant:
  • PCOR Training Program: We have completed 3 of 4 PCOR training sessions for the CF community. Our 4th training Designing and Implementing a PCOR Study for researchers and providers is scheduled for Tuesday, October 15th. We are presenting on this work at the 47th North American Primary Care Research Group Annual Meeting.
  • Best Practices User-Guide: We presented our preliminary work on developing the best practices user-guide for teams that collaborate or engage mostly online at the Department of Family Medicine Research Seminar. We are presenting this work as a poster on works-in-progress research at the 47th North American Primary Care Research Group Annual Meeting.
  • Additionally, the EWA team and CFReSHC are testing new online platforms (e.g., Asana, WhatsApp, BlueJeans) for collaboration. The EWA team is surveying CFReSHC members about experiences using the online platforms. This information will help members of the CF community select the best platforms for their PCOR projects. 
CFF Impact Award
The Impact Award team held their monthly PTF meeting in June on Sexual Health Pain with a panel discussion by PTF members. Members of the IA team submitted required reports to the CFF as the 2018-2019 Impact Award funding ended on September 30, 2019. We are pleased to announce that we received Impact Award funding from the CFF to complete the Women's Health Resource guide by patients for providers by September 2020.

Members took July and August off to focus on grant writing and returned in September with a meeting on genetic testing and counseling. Our next meeting will be in late October to review the steps required for writing the resource guide. PTF members who want to participate in writing the guide are encouraged to attend.
CFReSHC in the Community

Research Studies: 


RAP Member Dr. Sigrid Ladores received funding from the National Institutes of Child Health and Human Development to conduct a study that examines the current state of fertility preservation counseling for women with CF before lung transplantation from the perspective of: patients aged 18-35, their partners aged 18 and older and a variety of providers working in CF clinics. Participants will take an online survey to assess fertility preservation knowledge, experiences, preferences and concerns to receive a $20 gift card. Some participants can opt to do an in person or audio-taped interview with Sigrid for an additional $20. For more information on helping to develop fertility preservation guidelines for women with CF, contact Sigrid at 205-934-6835 or sladores@uab.edu or cfresearch2@uab.edu.
 

Conference Posters, Roundtables and Presentations: 


North American Cystic Fibrosis Conference [Accepted] - Sufian S, Godfrey EM. Advancing Patient Centered Outcomes Research (PCOR) in the CF Community: Opportunities and Challenges (Roundtable). North American Cystic Fibrosis Conference, Oct-Nov, Memphis, TN 2019.Society of Family Planning - [Accepted} Godfrey EM, Pam M, Mody S, Kazmerski T, 'Partnering with patients to fill research gaps in complex contraception (workshop). Society of Family Planning Conference, October 2019.

NAPCRG - North American Primary Care Research Group - [Accepted] - Sufian S. Brown G, Mentch L, Pam M, Shiffman M, Godfrey EM. Leveraging Patient Expertise to Advance CF-Sexual and Reproductive Health Research (Poster) North American Primary Care Research Group Conference, Nov. 2019, Toronto, Canada. 
June PTF Meeting Overview
On June 14, 2019, Patient Task Force members Jennifer Kyle and Jessi Mollman offered their personal experiences with Sexual Pain.

Jennifer discussed: "Dispareunia" which is painful intercourse. Sexual intercourse pain can be caused by lack of lubrication, childbirth, menopause or decreased estrogen not related to menopause. Vaginismus is when the vaginal walls tighten, especially in preparation for intercourse. Deep pain that typically occurs with deep penetration can be caused by endometriosis, uterine prolapse, hemorrhoids or irritable bowel syndrome. Diagnosis involves reviewing sexual history then detailing symptoms and undergoing tests. The doctor will also perform a pelvic exam to rule out abnormalities and other issues, such as irritation. She also discussed treatment options. Ospemifene is an oral medication indicated for the treatment of dyspareunia. Desensitization therapy involves relaxing the vaginal walls and performing exercises which can be done at home or with the help of a physical therapist trained in vaginal health. Non-invasive options include talking to your partner, allowing for more time before intercourse, additional lube or changing positions. However, it is important for women to select the right lubricant! When using a lubricant for sexual intercourse try a glycerin and paraben free option. There are a variety available that can be used with condoms, toys, during pregnancy and that are pH balanced. 

Jessi discussed her problems with endometriosis. Hormonal imbalances and family history can play a role in causing endometriosis. When she had frequent pain after getting an IUD, Jessi began keeping a journal of her pain and any circumstances involved. Her primary doctor ran diagnostic testing for ovarian cysts and other anatomy issues with an ultrasound. Her doctor thought it could be endometriosis so she took the pill continuously while also having the IUD in place. Her journaling indicated that things got worse and more frequent with this treatment plan. Then Jessi was referred to an ob/gyn specializing in pain disorders. Unfortunately, diagnosis for endometriosis requires surger so she tried an injection that shuts down the ovaries and stimulates menopause because this is the closest diagnostic option without surgery. For Jessi, the relief was almost immediate. However, she could not remain on the injection because at 30, early menopause was problematic due to bone loss coupled with CF related bone loss. The doctor suggested a hysterectomy BUT refused to operate because of her CF. At this time, her mother was diagnosed with ovarian cancer. So Jessi switched to her mother's doctor and had surgery for endometriosis and ovary removal because of family history. While some women live with endometriosis by managing the symptoms, Jessi is happy with her treatment plan. Jessi advocates for women pursuing medical advice if they experience pain.  

While both members of the panel shared informative presentations detailing their struggles with sexual health pain, due to the nature of the discussion, the presentation was not recorded. After the first hour of presentations, attendees spent time in break-out sessions discussing their own sexual pain issues.
We had our most ever responses to the Sexual Pain survey--over 50! Thanks to all who participated! This information helps us with our future research projects and grant applications.
September PTF Meeting Overview
 
ICYMI: On September 11, 2019, Genetic Counselor Elinor Schwind discussed "Genetic Testing and Counseling Considerations for Women with CF." Please click the picture to watch the video of her presentation.

On September 11, 2019, Elinor Schwind, Genetic Counselor at Mount Sinai-Beth Israel in New York, discussed "Genetic Testing and Counseling Considerations for Women with CF to the PTF." Elinor's presentation is available for viewing. Click here.

Genetic Counseling is the process of helping people respond and adapt to the medical, psychological, and familial implications of genetic contributions to disease. 

Genetic counselors have many roles. Since, CF newborn screening is now available in all 50 states, a genetic counselor can help the family understand the diagnosis. A genetic counselor can help with prenatal testing so that couples can better understand their risks of having a child with CF. Elinor pointed out that family members, like first cousins of people with CF, should consider genetic testing to be fully informed about their chances of passing on the CFTR gene and/or having a child with CF. In addition, genetic counselors work with women with CF who want to pursue pregnancy. They counsel on genetic testing for patients and their partners and associated issues such as infertility, medications while pregnant, FEV1 while pregnant or getting pregnant and CF related diabetes. Genetic counselors also work with pregnant women who find out their unborn child has CF.  

It is ideal for CF centers to have a genetic counselor on staff or, at least, a referral. However, many do not. There are databases to find a genetic counselor: 

  • www.nsgc.org  finding a genetic counselor interested in working with CF
  • www.cftr2.org  data base for different CFTR variants
In breakout groups, women discussed issues relating to genetic testing in CF. Not every center has a genetic counselor or the option for a referral to one who specializes in CF. Insurance does not always cover genetic testing for patients or for their partners. IVF is an expensive option for couples where the non-CF partner is a carrier and this is not often covered by insurance plans. Women discussed concerns about having a child with CF or caring for a child with another disability. They talked about resistance of family members getting tested to determine genealogy of family's CF history and prevalence. The attendees also wondered which genetic test is the most comprehensive for our needs and questioned the emotional impact of genetic testing. 
Here are the research questions generated after the September PTF on Genetic Counseling. 
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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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