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Volume 14 December 2019
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2020 CFReSHC Overview
 
CFReSHC is currently funded by two grants.
  • The Patient Centered Outcomes Research Eugene Washington Award team is actively working on building capacity for Patient-Driven research in the CF Community by developing a training program and best user guide. This funding will end August 2020. The good news is that Congress has reauthorized funding for another 10 years. CFReSHC will be pursuing additional funding when it becomes available.   
  • The CFF Impact Grant team is writing a CF Sexual & Reproductive Health Resource Guide by patients for providers. CFReSHC continues to hold monthly Patient Task Force meetings for women with CF on various sexual and reproductive issues faced by women with CF. This grant will end September 2020. The complete guide will be available online for CF providers, women's health providers and the CF Community.
December PTF Meeting 
On December 10, 2019, we had a Patient Task Force meeting on "Incontinence in CF." Incontinence is the leakage of urine or fecal matter which can be triggered by pulmonary function testing, airway clearance, heavy coughing or exercising. In women, pelvic muscles support the pelvic organs and bladder like a hammock. Frequent intense coughing can weaken the pelvic floors muscles and those surrounding the urethra, vaginal opening and anus, making them less effective. Physical Therapist and Pelvic Floor Specialist, Beth Taylor (Univ. of Cincinnati), provided a presentation and then spent 30 minutes taking questions from attendees on the causes of and treatments for incontinence. Many in the PTF were not aware that pelvic floor specialists existed or that they could provide physical therapy for incontinence. Beth discussed proper toilet mechanics, bladder training techniques and how to strengthen pelvic floor muscles. Beth shared the following benefits to improving pelvic floor function: 
  • Decrease incidence of incontinence (leaking urine or fecal matter)
  • Quality of life improvement
  • Decrease expense of products and treatment options
  • Intimacy improvement
The Incontinence chapter team also shared information on incontinence and received feedback on the draft of their chapter for the guide. Interestingly, the exact incidence of incontinence in CF is unknown due to limited research but the results we found indicate possible numbers as high as nearly 70%. Yet, this secondary complication from CF often goes unreported and untreated for three reasons:
  • Patients often experience embarrassment discussing urine and/or fecal leakage due to stigma
  • CF providers are unaware of this complication in CF
  • CF providers see incontinence as outside of their medical expertise  
During the break out sessions, attendees discussed what questions they would like their providers to ask them and what questions they might ask their providers. Members of the PTF voted and the top three will appear in the resource guide.  

Click here to watch Beth's presentation.
Governance Board Updates

The Governance Board (GB) meets monthly to discuss strategic decisions about patient driven research, the collaborative’s current projects and future opportunities. As illustrated in the November newsletter, CFReSHC had a great showing at conferences last year: NACFC, CFRI, the Society for Family Planning, and the North American Primary Care Research Group (NAPCRG). CFReSHC plans to continue this momentum by submitting abstracts in 2020 for NACFC, the European CF Conference, the Middle East CF Association Conference (MECFA), and the CFRI Conference. The Impact Award team is actively writing the CF Sexual and Reproductive Health Resource Guide by patients for providers. Writing teams consist of an Impact Award team member, a Leadership Committee member and two Patient Task Force members. Our Eugene Washington Award team updated the GB of its progress on bringing Patient Centered Outcomes Research (PCOR) to future CF research. The team will spend time this year writing articles for publication on the needs assessment and training program. GB members Patient Partner, Molly Pam, and Genetic Counselor, Elinor Schwind, will be presenting at CFF’s ResearchCon on April 16th.  Look for them in the sections “CFTR 101” and “The Future of Modulators and the Impact of FDA Approval of Trikafta.” We are actively looking to expand the RAP group to include professionals from many disciplines; social work, reproductive endocrinologists, nutritionists, physical and respiratory therapists. If you have any recommendations or would like to participate, please email us at info@cfreshc.org.

Women with CF: Join our next meeting
On Sunday, January 12, 2020 from 6:30-8:30 pm EST (5:30-7:30p CST; 4:30-6:30p MST; 3:30-5:30p PST) when Dr. Emily Godfrey (Univ. of Washington) will discuss "Contraception in CF." Emily will discuss contraception options and dispel contraception myths.  When Emily worked for the CDC , she realized research studies assessing contraception in CF were lacking so she has spent the past three years working with CFReSHC to help women with CF answer the questions important to them. Emily will answer audience questions after her presentation. 

 
Upcoming CFReSHC PTF Meetings

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.

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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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