The two-year initiative will build knowledge, tools, and lasting infrastructure to prepare patients, caregivers, clinicians, and researchers to partner in patient-centered comparative clinical effectiveness research.
MISSOULA, MT – Team Telomere, an international patient advocacy organization dedicated to the Telomere Biology Disorders (TBD) community, has received a $300,000 funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI).
The two-year funding award supports a project designed to prepare patients, caregivers, clinicians, and researchers to participate as informed and equal partners in future patient-centered comparative clinical effectiveness research (CER). The project, “Building Capacity to Engage in Patient-Centered CER in Telomere Biology Disorders,” runs from July 2026 through June 2028. It represents a milestone for the TBD community and Team Telomere’s longstanding commitment to ensuring that people affected by these rare, complex conditions have a meaningful voice in research relevant to their care.
Why This Work Matters
Telomere Biology Disorders are a group of rare, multisystem conditions caused by changes in genes responsible for maintaining telomeres, the protective structures at the ends of chromosomes. TBDs can affect nearly every organ system and present with extraordinary clinical variability, with manifestations ranging from bone marrow failure and pulmonary fibrosis to liver disease, immune dysfunction, and an elevated risk of certain cancers.
Because these disorders are so heterogeneous, individuals and their families routinely face high-stakes decisions about diagnosis, monitoring, treatment timing, and long-term management with limited comparative evidence to help inform those decisions.
Patient-centered CER compares healthcare options and examines outcomes that are important to patients, caregivers, clinicians, and other healthcare decision-makers. These may include quality of life, day-to-day functioning, symptom burden, treatment burden, and the longer-term consequences of different approaches to care.
This kind of evidence is especially important in rare and critical conditions such as TBDs, where individual circumstances can significantly influence care decisions and where outcomes important to patients and families may not always be adequately reflected in traditional research.
The TBD community has had limited structured opportunities to build shared foundational knowledge, skills, and infrastructure for engagement in patient-centered CER. This project is intended to help address that gap.
What the Project Will Accomplish
Over the course of two years, Team Telomere will lead a structured, multi-phase initiative to build sustainable capacity for patient-centered CER engagement across the TBD community.
The project is organized around four interconnected objectives:
First, the initiative will build patient and caregiver capacity by providing foundational education about patient-centered CER, including how comparative research questions are developed, how outcomes are selected, and the different roles patients and caregivers can play throughout the research lifecycle.
In parallel, the project will strengthen clinician and researcher readiness for meaningful partnership by supporting them in applying engagement practices aligned with PCORI’s Foundational Expectations for Partnerships in Research, with emphasis on shared leadership, effective communication, and fair compensation of patient and caregiver partners.
Patients, caregivers, clinicians, and researchers will also collaborate to co-develop practical engagement resources, including guides, checklists, templates, and plain-language educational materials tailored to the TBD community.
Finally, the project will establish sustainable structures for continued multi-stakeholder collaboration and patient-centered research engagement beyond the funded project period.
Community Voices at the Center
A central principle of this initiative is that lived experience is essential expertise in shaping relevant patient-centered research.
Patients, caregivers, and bereaved family members will make up at least half of the project’s Steering Committee and will help shape project activities, workshops, tools, and resources. Patient and caregiver partners will be compensated for their time and contributions throughout the project.
Early project activities included facilitated listening sessions held in conjunction with Team Telomere’s 2026 Scientific and Community Summit. These sessions brought together members of the TBD community to discuss the healthcare decisions they face, the questions they want research to address, and the outcomes that matter most to them.
Those insights will help inform subsequent educational activities, discussions, and resource development throughout the project.
About Team Telomere
Team Telomere has served the TBD community for over 16 years, bringing together patients, caregivers, clinicians, and researchers to advance education, care coordination, and research.
The organization has led biennial Scientific and Community Summits, research roundtables, ongoing Community Chats, and developed key resources including the ‘Telomere Biology Disorders: Diagnosis and Management Guidelines’, Second Edition.
This project builds on that foundation, establishing a clear pathway from community engagement toward structured readiness for patient-centered comparative effectiveness research.
To learn more, visit teamtelomere.org.
Project Leadership
Katie Stevens, CEO | Strategic Partnerships of Team Telomere, will lead the project, bringing nearly a decade of experience uniting patients, caregivers, clinicians, and researchers around TBDs. Stevens is an editor of the TBD Guidelines, has contributed to peer-reviewed publications in the field, and brings lived experience alongside her professional and scientific expertise.
She is supported by Kendall Davis, MPH, Administrative Official. Kendall will develop and implement listening sessions and oversee onboarding of the Steering Committee. Kendall will draw from her years of experience working with the rare disease community, industry and biotech leadership, and clinical trial development – always with better outcomes for the patient community as her north star.
Hannah Raj, MD, Program Administrator, brings her five years of experience developing Team Telomere’s research priorities with the patient voice centered. Hannah’s work has touched nearly every current program Team Telomere has, from structure, policy, communications and advocacy.
Maureen Hart, PhD, Consultant, brings expertise in patient engagement, collaborative research, and incorporating patient and stakeholder perspectives into research planning and implementation. Maureen will support the development of meaningful engagement strategies, helping ensure that patients, caregivers, clinicians, and researchers have opportunities to contribute throughout the project.
Melissa Kochanowsky, Consultant, is Associate Director of Programs at PFIC Network. Drawing on her experience with a previous PCORI Engagement Award project, Melissa will support Team Telomere in developing documentation and resources and reviewing engagement best practices.
Looking Ahead
“The work funded through this PCORI Engagement Award is an important step toward making sure the TBD community is prepared to help shape future patient-centered research. By building shared knowledge, practical tools, and lasting partnerships, we can bring patients, caregivers, clinicians, and researchers together to identify the questions and outcomes that matter most to families – and ensure their perspectives help inform future comparative effectiveness research.”
– Katie Stevens, CEO | Strategic Partnerships, Team Telomere
Team Telomere will disseminate project resources and learnings through its established community and professional channels and through partnerships with organizations serving communities affected by conditions associated with TBDs.
Community members interested in learning more about this project are encouraged to visit teamtelomere.org.