The PRO-CAR-T Study

As part of the NIHR Blood and Transplant Research Unit in Precision Cellular Therapeutics, the PRO-CAR-T study is dedicated to improving patient care through digital innovation. We are developing a new system to better monitor symptoms and enhance the delivery of CAR-T cellular therapies using patient-reported outcomes.

Our research is organised into three phases:

Phase 1. Co-design a digital monitoring system

• Using expert consensus to select the best patient-reported outcome measures for tracking patient symptoms and define the core requirements for our platform.

Phase 2: Platform Development

• Building the digital system in partnership with Aparito Limited and conducting usability testing to ensure it is effective and easy to use for both patients and clinicians.

Phase 3: AI & Clinical Integration

•  Developing AI models to identify side effects of CAR T-cell therapy sooner
• Testing the system’s feasibility and acceptability when used by NHS patients.

• Dr Sarah Hughes (email: s.e.hughes@bham.ac.uk)
• Prof Melanie Calvert (email: m.calvert@bham.ac.uk)
• Prof Lee Aiyegbusi (email: o.l.ayegbusi@bham.ac.uk)
• Dr Christel McMullan (email: c.mcmullan@bham.ac.uk)
• Dr Karen Shaw (email: k.l.shaw@bham.ac.uk)
• Dr Foram Khatsuria (email: f.khatsuria@bham.ac.uk)
• Dr Imane Guellil, Research Fellow

• Centre for Health Data Science
• ATTC
• CERSI-AT
• Cell and Gene Therapy Catapult 
• Anthony Nolan
• Centre for Patient-Reported Outcomes Research
• NIHR Blood and Transplant Research Unit - Precision Cellular Therapeutics
• Aparito
• NIHR Birmingham Biomedical Research Centre
• University Hospitals Birmingham NHS Foundation Trust

• Hughes, SE et al. Measure selection for an electronic patient-reported outcome (ePRO) system for CAR T-cell therapy patients: a modified Delphi consensus study, eClinicalMedicine, Volume 84, 103256. Measure selection for an electronic patient-reported outcome (ePRO) system for CAR T-cell therapy patients: a modified Delphi consensus study - eClinicalMedicine
• Khatsuria, F et al. Development of a conceptual framework for an electronic patient-reported outcome (ePRO) system measuring symptoms and impacts of CAR T-cell therapies in patients with haematological malignancies, The Lancet Oncology, Volume 25, Issue 10, e476 - e488. Development of a conceptual framework for an electronic patient-reported outcome (ePRO) system measuring symptoms and impacts of CAR T-cell therapies in patients with haematological malignancies - The Lancet Oncology
• Hughes SE, McMullan C, Aiyegbusi OL, et al. Protocol for a mixed-methods study to develop and feasibility test a digital system for the capture of patient-reported outcomes (PROs) in patients receiving chimeric antigen receptor T-cell (CAR-T) therapies (the PRO-CAR-T study) BMJ Open 2024;14:e085392. doi: 10.1136/bmjopen-2024-085392. Protocol for a mixed-methods study to develop and feasibility test a digital system for the capture of patient-reported outcomes (PROs) in patients receiving chimeric antigen receptor T-cell (CAR-T) therapies (the PRO-CAR-T study) | BMJ Open
• Shaw, K. L., Hughes, S. E., Aiyegbusi, O. L., Ansell, J., Chakera, E., Chakraverty, R., Chatterley, M., Ferguson, P., Khatsuria, F., Lloyd, R., McMullan, C., Peipert, J. D., Pyatt, L., Yarosh, V., & Calvert, M. J. (2026). The PRO-CAR-T™ study: achieving excellence in patient and public involvement and engagement. Journal of patient-reported outcomes, 10.1186/s41687-026-01036-x. Advance online publication. 

Our Patient and Public Involvement and Engagement (PPIE) group consists of patients and members of the public with lived experiences of CAR-T therapy. They influence how the research is carried out across all phases of the PRO-CAR-T study.

We believe that working in partnership with patients, carers and their communities makes research more relevant and useful.

That is why we work closely with patients and the public to plan, manage and undertake our research.

Our Patient and Public Groups

We have 2 main ways to connect, share ideas and work together:

Advisor Group

 This patient and public group works closely with our researchers to provide ongoing advice. We have regular online meetings where we discuss the research and share our perspectives. Members can also get involved in optional activities between meetings to suit their preferences, such as commenting on documents, making videos, attending research and community events.

Supporter Group

For those with less time, we also have a network of patients, carers, public members and community groups who receive a newsletter every 2-3 months that provides research updates and opportunities to get involved. Activities range from quick votes on options to completing surveys to share views. There also opportunities to meet the researchers and ask questions. Members can get involved as much, or as little, as they want.

You don’t need any special skills to join these groups – as it’s your experience that matters. We also want our research to be inclusive and welcome people from all backgrounds. Having a range of people with different experiences is important.

Interested and want to know more?

Complete our short form or get in touch with Karen and Lee at: btruppi@contacts.bham.ac.uk

You’ll receive a friendly reply with current opportunities and the chance to ask.

• Self-reported outcome measures could improve quality of life for CAR T-Cell therapy patients - University of Birmingham

This project is funded by the National Institute for Health & Care Research (NIHR) as part of the Blood and Transplant Research Unit in Precision Cellular Therapeutics (NIHR203339). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The PRO-CAR-T Study will run until April 2027.

For further information, contact the Study Research Team on BTRU@contacts.bham.ac.uk.

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