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.

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.

Ways to Get Involved

There are several opportunities to participate throughout this project.

Join the Steering Committee

Team Telomere is forming a multi-stakeholder Steering Committee that will help guide this project from beginning to end.

The Steering Committee will work collaboratively to review findings from Listening Sessions, help shape project activities, inform educational resources and training, and ensure that future patient-centered research reflects the priorities of the TBD community.

We’re seeking approximately 15 to 20 members representing a broad range of perspectives, including:

• Adults living with TBDs
• Parents and caregivers
• Family members
• Bereaved family members
• Clinicians
• Researchers
• Genetic counselors
• Nurses and allied health professionals
• Patient advocates and community partners

We are committed to building a Steering Committee that reflects the variety of perspectives and experiences within the TBD community.

Steering Committee members will:

• Participate in monthly virtual meetings
• Collaborate with patients, caregivers, clinicians, and researchers
• Contribute to focused working groups
• Help shape educational resources, engagement tools, and future research priorities

Compensation

Steering Committee members will receive compensation for their time and contributions. Additional details will be provided during the selection process.