The PRO-CAR-T Study is developing a new digital platform that empowers CAR-T patients to report their symptoms and quality of life using an app on their mobile devices, such as phones or tablets. This has involved detailed research to:
- Understand the full impact of this groundbreaking therapy on patients.
- Identify what outcomes matter most to them.
- Determine the best ways to measure these outcomes from a patient perspective.
A key aspect of this study has been the collaboration with our Patient and Public Partners, who have served as advisors and advocates throughout the project. Their regular meetings with researchers have shaped every critical step - from planning and conducting the research, to co-authoring journal articles.
We are therefore thrilled to see our approach to Patient and Public Involvement is reshaping perceptions about how patient outcomes for advanced therapies, like CAR-T, should be assessed.
Indeed, a group of American clinicians and researchers have written to The Lancet to praise the PRO-CAR-T study, stating that “the integration of concepts beyond symptom management in the framework is novel, and probably a testament to the inclusion of patient and caregiver perspectives, and should be commended.”
This BTRU study is a great example of how Patient and Public Involvement can improve research. We therefore extend our heartfelt thanks to our Patient and Public Partners for their invaluable contributions.
Contact us to see how you can also be involved in supporting better patient outcomes.
Click here to read the research article or Letter to the Lancet (or contact us).