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Center for International Blood and Marrow Transplant Research

CIBMTR at ISOQOL 2025

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Advancing Patient-Centered Research in Cellular Therapy

2025 International Society for Quality of Life Research (ISOQOL) Conference

A symposium at the 2025 International Society for Quality of Life Research (ISOQOL) Conference in Milwaukee, WI, will feature CIBMTR, highlighting the integration of PROs into clinical registries for HCT and cellular therapy, including HCT and CAR-T.

The symposium, titled “PRO be nimble, PRO be quick,” will explore the development and impact of CIBMTR’s centralized PRO infrastructure—an initiative that has enrolled more than 1,800 patients across 42 centers since its launch in 2020. This effort aims to enhance understanding of patient experiences, symptoms, and quality of life throughout the transplant and survivorship journey.

Rachel Cusatis, PhD, will moderate this session, which includes three presentations:

  • Deborah Mattila, Survey Research Group Manager, will discuss the design and implementation of the PRO system, including strategies to address disparities in response rates and improve outreach to underrepresented populations.
  • Miranda Kapfhammer, PRO Clinical Research Coordinator II, will present findings on financial toxicity among patients prior to receiving HCT or CAR-T therapy, revealing significant disparities by age, race/ethnicity, and income, and their associations with mental health.
  • Rachel Cusatis, PhD, Senior Scientific Director of Patient-Centered Research and Survivorship, will compare real-world PRO data with clinical trial participants from the ACCESS study, highlighting differences in social vulnerability and access to care among patients receiving similar treatments.

This symposium highlights the power of real-world PRO data to uncover disparities, guide interventions, and advance patient-centered care in cellular therapy. It also aligns with the broader conference theme, “Artificial Intelligence & the Future of Quality of Life Research,” by demonstrating how digital platforms and centralized infrastructure can amplify the patient voice in clinical research. CIBMTR’s own Kathryn Flynn, PhD, is a Scientific Program Committee Co-Chair. The 32nd Annual ISOQOL Conference will take place at the Hyatt Regency in Milwaukee, WI, October 22-25, 2025.

Additionally, CIBMTR will present a number of abstracts at the conference:

Presentation Title Date / Time Presentation Type Presenter
Using self-reported measures to assess financial toxicity in cellular therapy patients with hematologic diseases in a US setting: A scoping review Oct. 23, 2025
9:45 a.m.
Poster Sarah Reed-Thryselius, MPH
Financial toxicity and health: Results from a U.S. nationally representative survey Oct. 23, 2025
2 p.m.
Oral Oyiza Usman
Evaluation of demographic DIF in the PROMIS and EORTC cognitive function measures in a nationally representative US sample Oct. 24, 2025
1:35 p.m.
Oral Miranda Kapfhammer
Evaluation of enrollment rates to PRO data collection in a large clinical registry in the US - the first 5 years Oct. 24, 2025
3:35 p.m.
Oral Idayat Akinola
Individual and community-level social determinants associated with representation in a cellular therapy registry Oct. 24, 2025
3:35 p.m.
Oral Carlos Litovich, MPH