Community Voice: Monthly Results Updates

Welcome! In these digests you will learn about recent opportunities that Community Voice members have participated in, the feedback, ideas, and insights we gathered, and the next steps or impact of each project. 
If you are not a Community Voice member and would like to join, please click here.
   

New editions will be posted at the end of each month. 

Click below to view:
  • The May 2024 Edition
    This edition includes updates on research related to patient-provider trust, CF and menstrual cycles, improving clinic discussions on growth trajectory in children with CF, and more.

  • The April 2024 Edition
    This edition includes includes updates on research related to patient-provider trust, CF and menstrual cycles, improving clinic discussions on growth trajectory in children with CF, and more.

  • The March 2024 Edition
    This edition includes updates on Health Equity in Cystic Fibrosis, Financial Wellness Advisory Committee, PRIDE CF Brainstorming Project, recordings from BreatheCon 2024 and genetic therapies webinar, survey opportunities and more.

  • The February 2024 Edition
    This edition includes updates on intimate partner violence and CF, updates on clinical grant review committees, the 2023 Community Voice end of year survey, and external survey and small group discussion opportunities.

  • The January 2024 Edition
    This edition includes updates on the CF Foundation Financial Wellness Committee, and topics such as loss of smell and autoimmune disease in people with CF. 

  • The December 2023 Edition
    This edition includes updates on on TIME focus groups, Compass Resource Database Tester project, and topics such as GI and psychological interventions for pain management.

  • The November 2023 Edition
    This edition includes updates on the CF Liver Disease Guidelines, Prioritizing Research in Mental Health (PRIME) Work Group formerly known as the Mental Health Work Group, and the CF Community Blog Survey.

  • The October 2023 Edition
    This edition includes updates on the Clinical Research Executive Committee, Community Voice Spotlight Week, and Impact Grant awardees.

  • The September 2023 Edition
    This edition includes updates on a brand-new Community Voice Experiences Video, the upcoming Community Voice week, and other projects covering adults with CF who were diagnosed late, and outpatient antibiotic treatment strategies.

  • The August 2023 Edition
    This edition includes updates on the CF Care Model Position Paper Committee, Bionic Pancreas Advisory Committee, and other projects covering Community Voice members’ committee and workshop experience, CF care and research education and more.
     
  • The July 2023 Edition
    This edition includes updates on Community Conference recruitments, the CF Foundation Next Generation Patient Registry Project, the Compass Resource Database Testing project, and other projects covering physical activity, antimicrobial resistance, and more.

  • The June 2023 Edition
    This edition includes updates on a Nutrition Position Paper publication, Adult Advisory Council as well as topics regarding ear, nose and throat, autoimmune disease and more.

  • The May 2023 Edition
    This edition includes updates on the STOP Peds focus groups, RELIEVE Working Group as well as topics regarding sexual and reproductive health and more.
  • The April 2023 Edition
    This edition includes updates on the Medical Traumatic Stress Interviews, sexual reproductive health prioritization survey, as well as topics regarding challenges to manage CF due to financial burdens and more.
  • The March 2023 Edition
    This edition includes updates on the LITE Focus Groups, Racial Justice Health Equity Recommendations, ResearchCon and BreatheCon Speaker Recruitment, as well as topics regarding CFTR modulators and more.
  • The February 2023 Edition
    This edition includes updates on the Mary M. Kontos Selection Committee, Daily Care Check-In Resource Review, as well as topics regarding GI, survey review and more.
  • The January 2023 Edition
    This edition includes updates on the Community Voice End of Year Survey, BreatheCon 2023 Co-Chairs and Program Planning Committee, as well as topics regarding genetic therapies, and more. 
  • The December 2022 Edition
    This edition includes updates on the NACFC Program Planning Committee, University of Pennsylvania Well-Being Survey and covers topics such as Community Voice best practices on vetting projects and more. 
  • The November 2022 Edition
    This edition includes updates on the Janssen Study Feasibility Interviews, and covers topics such as SDOH, lung transplant, and more.
  • The October 2022 Edition
    This edition includes updates on the updates on the AbbVie Focus Groups Project, NACFC registration call-out and session panelists, ResearchCon Co-Chair recruitment and much more.
  • The September 2022 Edition
    This edition includes updates on the STRC Steering Committee, Genetic Therapies Workgroup, and results for the Wellness Message Testing survey.
  • The August 2022 Edition
    This edition of Community Voice: Monthly Results Updates includes project updates on several topics such as genetic therapies, foodways, treatment of pulmonary exacerbations, sexual health, reproduction and gender research in men with CF, and much more. 
  • The July 2022 Edition
    This edition of Community Voice: Monthly Results Updates includes project updates on several topics such as identity development in young adults with CF, remote CF care, social determinants of health, and much more. 
  • The June 2022 Edition
    This edition of Community Voice: Monthly Results Updates includes survey results from the CF Foundation’s community survey, project updates on several topics such as wellness, pancreatic enzyme replacement therapy, caregiver resilience, LGBTQIA+ care team resources, and much more.

  • The May 2022 Edition
    This edition highlights the STRC mHealth report, the newest members of the Newborn Screening Steering Committee, project updates on topics such as reflux and communication barriers in CF care, and much more.
  • The April 2022 Edition
    This edition highlights the Communities of Color Focus Group Report, project updates on topics such as parenthood, food insecurity, nutrition, and much more.

  • The March 2022 Edition
    This edition highlights the newest members of the Compass Advisory Board, project updates on topics such as genetic counseling, gastrointestinal treatment simplification, and much more.

  • The February 2022 Edition
    This edition highlights the newest members of the CF Community Blog Editorial Board, project updates on topics such as food security, infection research, patient-centered outcomes research, and more.

  • The January 2022 Edition
    This edition highlights the newest community member grant reviewer of the Clinical Research Committee, an update on a project about urinary incontinence, and much more.

  • The December 2021 Edition
    This edition highlights the newest members of the CF Lung Transplant Consortium Steering Committee and Protocol Review Committee, project updates on topics such as the STOP2 study, exercise and airway clearance, food security, and more.

  • The November 2021 Edition
    This edition highlights the newest members of the COVID-19 Medical Advisory Group and ResearchCon 2021 Executive Committee, project updates on topics such as home spirometry device use in clinical research and CFTR modulator ineligibility/nonuse, and more.

  • The October 2021 Edition
    This edition highlights the newest members of the STRC Steering Committee and Chronic Lung Allograft Dysfunction (CLAD) Biomarkers Full Application Review Committee, project results and updates on topics such as CFTR-Related Metabolic Syndrome, the Experience of Care Survey, the CF Peer Connect program, and more.

  • The September 2021 Edition
    This edition includes the newest members of the Advanced CF Lung Disease Community Working Group, project updates on topics including home sputum collection, gastrointestinal medication reduction, and back to school resources, and more.

  • The August 2021 Edition
    This edition includes the newest members of the Genetic Therapies Working Group, an announcement about the Lung Transplant Biorepository and Patient Registry, updates on the cff.org replatforming project, and much more.

  • The July 2021 Edition
    This edition includes the newest member of the STRC Steering Committee, three publications on post-lung transplant care guidelines, pain management in CF, and CFRD, and much more.

  • The June 2021 Edition
    This edition includes the newest members of the Adult Advisory Council and Education Committee, an update on the HERO-2 study and focus groups on mental health & emotional well-being in adolescents, and much more. 

  • The May 2021 Edition
    This edition includes the newest members of the Racial Justice Working Group and PCOR Training Advisory Group, an update on the Mental Health Research Prioritization Survey, a new resource on mental health for adolescents, and much more.

  • The April 2021 Edition
    This edition includes an update about how Community Voice members contributed to ResearchCon 2021 and the Telehealth & Remote Monitoring Workshop, findings from the Genetic-Based Therapies Survey and Food Security Survey, and more.

  • The March 2021 Edition
    This edition includes an announcement about virtual engagement best practices for patient-centered outcomes research teams, the newest members of the Pain Management Guidelines Committee, an update on the CF PROSPER study, and more.

  • The February 2021 Edition
    This edition includes an announcement about the new Community Voice: 2020 Year in Review Report, findings from the 2020 CF Community State of Care Survey, the Foundation's new Food Security patient resource, and more.

  • The January 2021 Edition
    This edition includes an announcement for an article about Community Voice's involvement in the GALAXY study, a link to the COVID-19 Vaccine Community Town Hall, a final update on the 2019 Health Insurance Study, results from the Community Voice: End of Year Survey, and more.

  • The December 2020 Edition
    This edition includes a final update on the multi-phased CF-related diabetes project, results from a recent survey on lung transplantation, the newest members of several committees such as the CF Foundation's Access Steering Committee, and more.

  • The November 2020 Edition
    This edition includes an announcement about the Foundation's efforts to work with the CF community to address racism and discrimination, the newest members of the ResearchCon 2021 Executive Committee and PRISM-CF Study Advisory Team, and more.

  • The October 2020 Edition
    This edition highlights how the voice of the CF community was heard throughout North American Cystic Fibrosis Conference (NACFC), how members helped inform COVID-19 related projects, the newest members of the Foundation’s Data Use & Evidence Working Group, and more.

  • The September 2020 Edition
    This edition includes an announcement about the Models of Palliative Care Guidelines and the newest members of several committees, including the Data Safety Monitoring Board, Food Security Committee, and more.

  • The August 2020 Edition
    This edition includes a registration link for this year's virtual North American Cystic Fibrosis Conference (NACFC), the full report on the Success with Therapies Research Consortium's Community Input Project Survey, and more.

  • The July 2020 Edition
    This edition includes an announcement about several publications that highlight the importance of incorporating the community's voice in CF care and research efforts, the newest members of the CF Liver Disease Guidelines Committee, results from the Success with Therapies Research Consortium's Community Input Project Survey, and more.

  • The June 2020 Edition
    This edition includes a special dedication to Drucy Borowitz, MD as she retires from the CF Foundation, a warm welcome to Sue Sullivan, RN, BSN who will serve as the new department head of the Community Partnerships department, an update on the CF-related diabetes project, the newest members of the Adult Advisory Council and CF Community Blog Editorial Board, and more.

  • The May 2020 Edition
    This edition includes the two newest members of the Therapeutic Development Network's Women's Health Research Working Group, the group's involvement and impact on three research studies, and more.

  • The April 2020 Edition
    This edition includes results from the ear, nose, and throat survey, the newest members of the Compass Advisory Board and Mary M. Kontos Award Selection Committee, an update from January's Real World Research Meeting, and more.

  • The March 2020 Edition
    This edition includes the latest resources and updates from the Foundation regarding the coronavirus (COVID-19), an update on the impact of community input on the SIMPLIFY study and CF Health Insurance Study, and more.


  • The February 2020 Edition
    This edition includes a copy of the Community Voice: 2019 Year in Review Report, Advanced CF Lung Disease CF Care Guidelines, plus results from two focus groups regarding the STOP-Peds study and women's reproductive health.


  • The January 2020 Edition
    This edition includes an announcement about the CF Foundation's long-term strategic plan, information about the group's involvement in two research studies, results from our end-of-year feedback survey, and more.


  • The November/December 2019 Edition
    This edition includes a copy of the CF Research in Progress: The Community's Voice in Action webinar, access to the 2019 NACFC plenaries, workshops, and symposium sessions, results from the CF Community Blog survey, and more.


  • The October 2019 Edition
    This edition includes an announcement about the recent approval of triple-combination modulator Trikafta™, information about how to watch the livestream sessions for the North American Cystic Fibrosis Conference, and the full list of projects that Community Voice members were involved in that were presented at the conference.


  • The September 2019 Edition
    This edition includes registration for this year’s North American Cystic Fibrosis Conference (NACFC) livestream, the Infection Research Initiative’s redesigned webpage on cff.org, the newest members of the Success with Therapies Research Consortium Steering Committee, and more.


  • The August 2019 Edition
    This edition includes what CF clinical research grants have been awarded this year, the newest member of the Education Committee, videos from CF community members who shared about what it means to them to be a part of Community Voice, and more.


  • The July 2019 Edition
    This edition includes resources relating to the Lung Transplant Initiative and infection prevention and control, the newest members of the Data Safety Monitoring Board, and more.


  • The June 2019 Edition
    This edition includes an unveiling of the Teen Connections Initiative, the In-District Meeting Toolkit, results from several projects on topics such as CF care motivation and placebo use, and more.


  • The May 2019 Edition
    This edition includes the new Adult Care Checklist, the newest members of the Adult Advisory Council, and more.


  • The April 2019 Edition
    This edition includes the redesigned "Get Involved" section of cff.org, results from the 2018 North American Cystic Fibrosis Conference (NACFC) post-event survey, and more.


  • The March 2019 Edition
    This edition includes the CF Lung Transplant Referral Guidelines, an update on the survey about substance misuse information on cff.org, and more.


  • The February 2019 Edition
    This edition includes the Community Voice: 2018 Year in Review Report plus results from several projects on topics such as triple combination CFTR modulators, substance misuse, and more. 

Invite others to join Community Voice by sending them to cff.org/CommunityVoice.

For questions or concerns, please contact the CF Foundation's Community Partnerships department at communityvoice@cff.org.