2026 TBRS Community Summit Agenda

(All times listed are Central Time)

[tab tab_content_id="tabs_agenda1"] [tab_link]Thursday, 3/19/26[/tab_link] [tab_link]Friday, 3/20/26[/tab_link] [tab_link]Saturday, 3/21/26[/tab_link] [/tab] [tab_content content_id="tabs_agenda1"] [tab]

[icon style="icon-clock-o"/]  TIME Central Time	[icon style="icon-7s-note2"/]  Research Exchange and Patient Priorities Scientists only. Family Conference begins at 5:30pm.
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 Watch Video

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[icon style="icon-clock-o"/]  TIME Central Time	[icon style="icon-7s-note2"/]  Building Capacity for Patient-Centered Research Scientists and Families
9:00am	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. Watch Video
9:30am	Genetics Presentation and Q&A Discussion Dr. Kate Tatton-Brown Watch Video
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 Watch Video
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. Watch Video
3:45pm	Family Activities/Support Groups (not live streamed)
5:30pm	Gordon Hartman Welcome Watch Video

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[icon style="icon-clock-o"/]  TIME Central Time	[icon style="icon-7s-note2"/]  Patient Priorities and Stakeholder Engagement Scientists and Families
9:00am	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. Watch Video
9:15am	Hematology and Oncology: Considerations for TBRS patients Dr. Rachel Rau Watch Video
10:00am	Aortic dilation, the impact of participating in research, and an upcoming study into bone abnormalities Dr. Irene Valenzuela and Dr. Vicken Totten Watch Video
10:45am	Cardiology concerns for TBRS patients Dr. Stephen Archer Watch Video
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)

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