%0 Journal Article
%T Current trends and outcomes in cellular therapy activity in the United States, including prospective Patient Reported Outcomes data collection within the CIBMTR registry.
%A Cusatis R
%A Litovich C
%A Feng Z
%A Allbee-Johnson M
%A Kapfhammer M
%A Mattila D
%A Akinola I
%A Phelan R
%A Broglie L
%A Auletta JJ
%A Steinert P
%A Bolon YT
%A Akhtar O
%A Bloomquist J
%A Chen M
%A Devine SM
%A Bupp C
%A Hamadani M
%A Hengen M
%A Jaglowski S
%A Kaur M
%A Kuxhausen M
%A Lee SJ
%A Moskop A
%A Page KM
%A Pasquini MC
%A Rizzo D
%A Saber W
%A Spellman SR
%A Stefanski HE
%A Tuschl E
%A Yusuf R
%A Zhan K
%A Flynn KE
%A Shaw BE
%J Transplant Cell Ther
%V 0
%N 0
%D 2024 Jun 27
%M 38944153
暂无%R 10.1016/j.jtct.2024.06.021
%X <B>BACKGROUND: </B>Center for International Blood and Marrow Transplant Research (CIBMTR) prepares an annual set of summary slides to detail the trends in transplantation and cellular therapies. For the first time in the 2023 summary slides, CIBMTR incorporates data for patients receiving chimeric antigen receptor T-cell (CAR-T) infusions. In addition, the data on patient-reported outcomes (PROs) is also included.<BR><B>OBJECTIVE: </B>This report aims to update the annual trends in US HCT activity and incorporate data on the use of CAR-T therapies. Here we also aim to present and describe the development, implementation, and current status of the PRO data collection.<BR><B>METHODS: </B>In August 2020, CIBMTR launched the Protocol for Collection of Patient Reported Outcomes Data (CIBMTR PRO Protocol). The CIBMTR PRO Protocol operates under a centralized infrastructure to reduce burden to centers. Specifically, PRO data is collected from a prospective convenience sample of adult HCT and CAR-T patients who received treatment at contributing centers and consented for research. Data are merged and stored with the clinical data and used under the governance of the CIBMTR Research Database Protocol. Participants answer a series of surveys developed by the Patient Reported Outcomes Measurement Information System© (PROMIS) focusing on physical, social and emotional, and others measures assessing financial well-being, occupational functioning, and social determinants of health. To complement traditionally measured clinical outcomes, the surveys are administered at the same timepoints that clinical data is routinely collected.<BR><B>RESULTS: </B>As of September 2023, PRO data from 993 patients across 25 different centers has been collected. With the goal of incorporating these important patient perspectives into standard clinical care, CIBMTR has added the PRO data to Data Back to Centers (DBtC). Through expanding the data types represented in the registry, CIBMTR aims to support holistic research accounting for the patient perspective in improving patient outcomes.<BR><B>CONCLUSIONS: </B>PRO data at CIBMTR aims to provide the foundation for future large scale, population-level evaluations to determine areas for improvement, emerging disparities in access and health outcomes (eg, by age, race, and ethnicity), and new therapies that may impact current treatment guidelines. Continuing to collect and grow the PRO data is critical for understanding these changes and identifying methods for improving patient quality of life.