2026 TBRS Community Summit Agenda

(All times listed are Central Time)

• Thursday, 3/19/26
• Friday, 3/20/26
• Saturday, 3/21/26

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  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.

   

  TIME Central Time	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

• TIME Central Time	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

• TIME Central Time	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)