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CF Partner Collaborative
Understanding the partner experience. Elevating what we learn. Creating change.
Project CF Spouse has always been a project in progress, shaped by the people it exists to serve. The CF Partner Collaborative brings those voices together through surveys, stories, conversations, and shared ideas that help guide our research, resources, and advocacy.
By asking questions, examining what we hear, and sharing what we learn, the Collaborative builds a growing body of knowledge about the CF partner experience. That knowledge can help inform research, healthcare, advocacy, and the future work of Project CF Spouse.
Why This Project Exists
The partner experience deserves to be understood on its own.
Much of what we know about cystic fibrosis understandably centers on people living with CF and their health outcomes. When the experiences of those around them are studied, spouses and partners are often included within broader definitions of caregivers or family.
But being the spouse or partner of someone with CF is its own experience.
Relationships, families, healthcare, work, finances, identity, intimacy, major life decisions, changing treatments, uncertainty and the ordinary rhythms of life can all intersect with CF in ways that evolve over time.
The CF Partner Collaborative creates a dedicated space to ask those questions, including the ones we have not identified yet.
How the Project Works
01 | We Ask
We listen for questions that need answers.
Some projects may explore the partner experience broadly. Others may focus on a specific issue, life stage, emerging challenge, or change within the CF landscape. Questions may come from partners themselves, previous findings, gaps in existing research, healthcare professionals, or opportunities for collaboration.
Data collection may include surveys, short questionnaires, qualitative responses, polls, interviews, or other approaches appropriate to the question being explored.
03 | We Learn
What we collect should lead somewhere.
Project CF Spouse analyzes community input to identify patterns, emerging needs, unanswered questions, and areas that deserve greater attention. Findings are shared in accessible ways so partners, clinicians, researchers, advocates, and organizations can learn from them.
This may include:
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Community insights
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Research briefs
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Data snapshots
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Partner voices
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Presentations
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Reports
04 | We Act
Understanding the experience is only the beginning.
What we learn can help identify gaps in support, raise questions about existing systems and practices, inform future Project CF Spouse initiatives, contribute to healthcare conversations, guide advocacy, and create opportunities for further research and collaboration
The goal is not simply to collect partner experiences.
It is to make sure those experiences have somewhere to go.
What We've Learned So Far
Before the CF Partner Collaborative had a name, Project CF Spouse was asking questions and listening to partners.
Community-based data collection conducted between 2022 and 2025 explored multiple aspects of the partner experience and helped identify recurring areas of unmet need. That work became the foundation for our 2026 NACFC presentation and helped shape what comes next.
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Community-based data collection instruments
345
Responses
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Domains of unmet needs identified in our initial analysis
Partner Voices
The Experience Behind the Data
Every percentage represents a person, a relationship, and an experience that cannot always be captured by a number.
Partner voices help us understand the context behind our findings, identify experiences we may not yet be asking about, and remind us why this work matters.
For Clinicians, Researchers, & Organizations
Let's Learn From Each Other
The CF Partner Experience Collaborative is intended to grow through collaboration.
We welcome conversations with clinicians, researchers, advocacy organizations, community groups, and others interested in better understanding or including the perspectives of spouses and partners.
Whether you are developing research, creating a resource, examining an emerging issue, seeking community input, or simply asking a question we should be thinking about, we would like to hear from you.
The questions will change. The commitment won't.
CF has changed dramatically, and it will continue to change. The experiences of the people who share their lives with someone with CF will change with it.
The CF Partner Collaborative gives those experiences a place to be documented, examined, shared, and carried forward.
Because understanding the full CF experience means understanding partners, too.