2026 TBRS Community Summit Agenda
(All times listed are Central Time)
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TIME
Central TimeResearch Exchange and Patient Priorities
Scientists only. Family Conference begins at 5:30pm.
The Scientific Meeting was recorded. To request a recording, please contact Jill Kiernan at This email address is being protected from spambots. You need JavaScript enabled to view it.9:00am Welcome from the TBRS Community
9:15am Biology and Mechanisms of TBRS: Family perspective: Jenny Beeson and Family
Facilitated workshop linking scientific updates to patient priorities; working group formed for post-Summit follow-up. Facilitated by Dr. Harrison Gabel
10:30am BREAK
10:45am Biomarkers and Candidate Outcome Measures: Family perspective: Jamie Class and Family
Workshop discussion tying outcome measures to meaningful daily life impacts; working group formed for post- Summit follow-up. Facilitated by Dr. Rosanna Weksberg
12:00pm LUNCH
1:00pm Comparative Clinical Effectiveness Research Questions and Treatment Development for TBRS: Family perspective: Andrew Vitullo and Family
Facilitated discussion on planning to incorporate patient-centered CER-relevant questions into developing a moonshot for TBRS; working group formed for follow-up. Facilitated by Dr. Terry Jo Bichell
2:15pm BREAK
2:30pm Incorporating Patient Priorities and Comparative Clinical Effectiveness Questions into Research: Exploring patient-centered CER and why it matters for TBRS (Tailored to Researchers and Clinicians)
2:45pm Accelerating progress in 2026: Open discussion facilitated by Kerry Grens, TBRS Board Vice President
3:15pm Networking and 1:1 Appointments
(not live streamed)
5:30pm Family Conference: Welcome from the TBRS Community
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TIME
Central TimeBuilding Capacity for Patient-Centered Research
Scientists and Families9:00am TBRS Welcome: From Questions to Care: How Patient Priorities Shape Patient-Centered Comparative Clinical Effectiveness Research (CER)
Plain-language introduction to patient-centered CER for all stakeholders.
9:30am Genetics Presentation and Q&A Discussion
Dr. Kate Tatton-Brown
10:50am BREAK
11:00am Support and Sharing Groups
(not live streamed)
12:00pm LUNCH
1:00pm Neurology, cognitive, and behavioral concerns for TBRS patients presentation with questions & answers
Dr. Jacquelyn Harris
2:15pm BREAK
2:30pm Science Session: Research Roadmap
Approaches to TBRS treatment development: gene science, drug development, repurposing, and other methods
Dr. Kim Boua, Dr. Laura Lavery, and Dr. Serge McGraw
20-minute Q&A, with facilitators highlighting patient-centered CER-relevant themes.3:45pm Family Activities/Support Groups
(not live streamed)
5:30pm Gordon Hartman Welcome
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TIME
Central TimePatient Priorities and Stakeholder Engagement
Scientists and Families9:00am TBRS Introduction to the Day: Gathering Patient Priorities for Patient-Centered CER
Brief introduction to remind participants of patient-centered CER basics and explain how their input in focus groups and interviews will shape patient-centered CER questions for the PRISM Roadmap.
9:15am Hematology and Oncology: Considerations for TBRS patients
Dr. Rachel Rau
10:00am Aortic dilation, the impact of participating in research, and an upcoming study into bone abnormalities
Dr. Irene Valenzuela and Dr. Vicken Totten
10:45am Cardiology concerns for TBRS patients
Dr. Stephen Archer
12:00pm LUNCH
1:00pm Research Participation:
We will be holding Patient Priorities Focus Groups at this time. Participants who have been pre-consented and enrolled in the program will participate in the research project.
(not live streamed)
