Community Input Into Research

The Cystic Fibrosis Foundation can help you engage people with cystic fibrosis so that you can incorporate their voices into the decision-making process throughout the development lifecycle of your clinical trial.

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Summary
  • The Cystic Fibrosis Foundation can facilitate community feedback to inform your research priorities and study design.
  • Feedback can be gathered from a broad, representative group of over 1,000 people with CF and their family members or collected from smaller groups with specific research experience, skills, or training. 

Partnering with the community is essential to ensure that research has the greatest impact on those living with the disease. To get started, contact communityvoice@cff.org.  

Why Incorporate the Community into Research?

By engaging the CF community in clinical research, sponsors and investigators can:

  • Enhance study design and improve feasibility
  • Direct research toward questions that matter most to people with CF
  • Leverage the experience of the community to promote trust and demonstrate that patients are at the center of your research
  • Contribute to creating a more informed patient population
“This feedback really sharpens our focus on the issues that matter and often gives us new ideas and insights on how we might be able to help.” -- Scott Donaldson, professor of medicine and director of the adult CF program at the University of North Carolina at Chapel Hill.

How Can Researchers Incorporate Community Feedback?

The Cystic Fibrosis Foundation can facilitate community feedback to inform your research priorities and study design. Opportunities to partner with the community occur throughout all the stages of a clinical trial, and you can use existing data or collect new insights to inform your research project. Based on your goals and objectives, the CF Foundation will work with you to determine which mechanisms are most appropriate.

To inform your research project, community members can provide input on:

  • Scientific relevance: Is the trial studying something that will be meaningful to the CF community?
  • Eligibility criteria: Are the enrollment criteria feasible?
  • Procedural burden: How feasible is the schedule of events? What are the perceived risks and benefits of participation?
  • Communication: How effective are clinical trial communications to patients? Do they provide the information patients want and need?
  • Other research needs that would benefit from community input

Watch three study investigators discuss how CF community members provided critical insights that helped shape the design of major clinical trials.

How Is Community Feedback Collected?

  • Data repository: Existing data from previous community research, including community interest in clinical trials and common barriers to participation
  • Surveys: Quantitative feedback from a wide audience of people with CF and their family members
  • Focus groups: In-depth, qualitative insights in a smaller virtual group setting
  • Community reviewers: Small group of trained community members who are under confidentiality provide in-depth feedback on study materials

Feedback can be gathered from a broad, representative group of over 1,000 people with CF and their family members or collected from smaller groups with specific research experience, skills, or training. The CF Foundation can provide in-house expertise in data analysis, survey design, and focus group facilitation and will work with you to determine the best approach to collecting community feedback for your project.

Surveys and focus groups are hosted in-house by the CF Foundation. Data and results reports are delivered in the format of your choosing. Contact communityvoice@cff.org to get started.

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There is no cost for this service. Community feedback is intended to help direct research toward questions that matter most to patients, enhance study design, and improve feasibility of CF clinical trials. The CF Foundation does not conduct market research on behalf of industry sponsors or solicit community feedback on specific drugs or products. 

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Topics
Research | Researcher Resources
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Downloads
Role of Community Members in CF Clinical Research Download (PDF)
Guidelines for Using Community Voice Download (PDF)
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