Team Telomere is proud to partner with the Patient-Centered Outcomes Research Institute (PCORI) on Building Capacity to Engage in Patient-Centered Comparative Clinical Effectiveness Research in Telomere Biology Disorders (TBDs), a two-year Initiative (PCORI Contract #EACB-49188) designed to strengthen the ability of individuals and families affected by TBDs to partner in future patient-centered research.
Every important research question starts with the people most affected by it.
People living with TBDs make complex care decisions every day. Patients, care partners, clinicians, and researchers each bring unique expertise, but meaningful collaboration doesn’t happen automatically. This project is designed to build the knowledge, skills, relationships, and resources needed so that future research reflects the questions, outcomes, and priorities that matter most to the TBD community.
This project is a community engagement and capacity-building initiative that brings together patients, care partners, clinicians, and researchers to shape the future of patient-centered research in Telomere Biology Disorders. (This is not a clinical trial and does not involve testing treatments or providing medical advice.)
Whether you’re living with a TBD, caring for a loved one, providing clinical care, conducting research, or supporting the community in another way, there are opportunities to become involved.
A $300,000 Investment in Our Community’s Research Future
Team Telomere has been awarded a $300,000 Eugene Washington PCORI® Engagement Award to support this two-year initiative. Learn more about the award, our project goals, and how our community will help shape this work.
What is PCORI?
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress to fund research that helps patients, caregivers, and clinicians make better-informed healthcare decisions.
PCORI believes that research is strongest when the people most affected by a condition help shape it. Rather than asking researchers alone to decide what questions should be studied, PCORI supports meaningful partnerships between patients, caregivers, clinicians, researchers, and other stakeholders throughout the research process.
This project focuses on building the capacity of the TBD community to participate in future patient-centered comparative clinical effectiveness research (CER).
What is Patient-Centered Comparative Clinical Effectiveness Research (CER)?
Comparative clinical effectiveness research (CER) compares existing healthcare approaches to understand what works best, for whom, and under what circumstances.
For individuals and families affected by TBDs, many important decisions involve choosing between different approaches to diagnosis, monitoring, supportive care, care coordination, and treatment. CER helps generate evidence that supports these real-world decisions.
Patient-centered CER goes one step further by ensuring that patients, caregivers, clinicians, and researchers work together to identify:
- The questions that should be studied
- The outcomes that matter most
- The trade-offs families consider when making healthcare decisions
- The evidence needed to improve care
About This Project
Over the next two years, Team Telomere will work with patients, caregivers, clinicians, researchers, and community partners to:
- Identify the healthcare decisions and uncertainties that matter most to the TBD community
- Build shared understanding of patient-centered research
- Develop educational resources and training opportunities
- Create practical tools that support meaningful patient engagement in research
- Establish sustainable structures for ongoing collaboration between patients and researchers
By the end of the project, the TBD community will have new resources, training materials, engagement tools, and structures that strengthen readiness to participate in future patient-centered research.
What’s Happening in the Project
From listening sessions to Steering Committee discussions, our community’s experiences and perspectives are guiding this work. Here’s a look at our progress and the activities underway.
Virtual Listening Sessions
Team Telomere held virtual Listening Sessions with adults living with Telomere Biology Disorders, care partners, and family members to better understand the real-world decisions, challenges, and outcomes that matter most to our community.
During the session we discussed:
- Healthcare decisions that feel difficult or uncertain
- Outcomes that matter most to individuals and families
- Where better information could improve care
- How future research can better reflect community priorities
Steering Committee
The project’s multi-stakeholder Steering Committee brings together lived experience, clinical expertise, research knowledge, and community perspectives to help guide this initiative.
The committee is designed to reflect the variety of experiences within the TBD community, including those of people living with TBDs, parents and caregivers, family members, bereaved family members, healthcare professionals, researchers, and patient advocates.
Members will participate in regular virtual meetings and collaborative activities throughout the project.
Stay Connected
We’ll share project updates, resources, and additional opportunities for community involvement here as they become available.