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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We are pleased to welcome a new member to the CFReSHC Governance Board. Megan Lepore is a patient partner and currently serves as a Deputy Division Director at the Centers for Medicare & Medicaid Services. Megan has worked in healthcare policy on the federal level for almost ten years. She also performed a rotation as a Presidential Management Fellow at the National Institute of Child Health and Human Development at NIH. Megan will use her expertise working on the Group Norms and Governance Subcommittee. The Governance Board plans to fill the remaining two open positions from members who stepped down soon.
During the April meeting, members discussed activities related to our two active grants, such as finalizing the PCOR training program to share with participating PTF members. Clinicians and patient partners are submitting abstracts to various conferences but have yet to hear back on acceptance. Members are actively submitting letters of intent and grant proposals based on the feedback of Patient Task Force Members. CFReSHC talked about more outreach through local CF chapters and discussed the process of how to become a nonprofit. In addition, CFReSHC has a general fund at the University of Washington, a non-profit, for fundraising purposes.
In May, the Governance Sub-Committee introduced ground rules to enhance virtual meetings. Members discussed upcoming conferences that CFReSHC members will attend and present at. For example, Traci Kazmerski, CFReSCH GB and RAP member, will present and CFReSHC will have a table at the annual CFRI conference in July.
The new CReSHC website is live at: www.CFReSHC.org. Please take a look and offer feedback: what would you like to see added about our collaborative. CFReSHC plans to put a form on the website allowing researchers to collaborate with CFReSHC on their CF-SRH projects.
It is important to note that the Patient Centered Outcomes Research Institute (PCORI), who funds our Eugene Washington Award, is up for budget re-authorization. If PCORI loses their funding, it will be detrimental to the organization moving forward and its ability to provide funding opportunities for projects like ours. For more information please visit: https://reauthorizepcori.org/.
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Dr. Sheila Mody, Family Planning Specialist, recommended women watch this short video during her presentation to promote shared decision making with your women's health care provider.
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ICYMI: Dr. Patricia Walker discussed the importance of patients developing a CF-Sexual & Reproductive Health (CF-SRH) guide for providers. Click the picture to watch the presentation.
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On May 18, we discussed "Creating A Sexual and Reproductive Health Guide For Providers." Dr. Patricia Walker, Pulmonologist and Director of Mount Sinai Beth Israel's Cystic Fibrosis Center, shared her ideas for a guide designed by women with CF for CF clinicians and women's health care providers. The goal of the guide is to enable women and their providers to engage in conversations about the unique sexual and reproductive health issues faced by women with CF.
Our break out groups focused on what SRH topics need to be included in a guide from the perspective of patients and providers. Some questions to consider with the guide include: What should you tell your provider about your sexual and reproductive health (SRH)? And specifically, which provider do you discuss your SRH issues with: your CF care team or your women's health provider? What questions should your provider ask you? What questions should you ask your provider? What research has been conducted on the topic? What research needs to be conducted? What treatment methods are established? We need input from PTF members to help design and develop the guide as part of our next CFF Impact Award grant. We will set up work groups to enable members of the PTF to conduct SRH research and write on selected topics. Look for more information on how you can participate.
PTF members were asked to select the top sexual health topics to cover in the guide:
(PTF members: If you have not yet taken the survey, click here as we want your input)
- Hormonal influences on CF symptoms
- Vaginal Health
- Contraception
- Modulators and SRH
- Menopause
- Mental Health
- Sexual Function
- Nutrition/Body Composition/Body Image
- Pregnancy
- Care coordination
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ICYMI: On April 4, 2019, Drs. Emily Godfrey and Sheila Mody provided a presentation on "Creating A Relationship With Your Women's Health Care Provider." Click picture to view the recording of the presentation.
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