Danielle Musson, PhD researcher at Leeds Beckett University, recently presented important work at the annual UK PROMs Conference in Birmingham (pictured left). She showcased a collaborative project between Immunodeficiency UK and Leeds Beckett University.

The project aims to develop and validate a patient-reported outcome measure (PROM) for people living with both primary and secondary antibody deficiency (AD)—a significant step forward, as no disease-specific PROM currently exists for this group.

Danielle’s presentation highlighted the impressive progress made so far. The team has nearly completed the development phase of the PROM, which has been shaped by the voices and experiences of immunodeficiency patients:

The project aims to develop and validate a patient-reported outcome measure (PROM) for people living
with both primary and secondary antibody deficiency (AD)—a significant step forward, as no disease-specific PROM currently exists for this group.

In phase one, 27 individuals diagnosed with a range of ADs were interviewed to explore how their condition affects their quality of life. Danielle Musson, PhD researcher at Leeds Beckett University, recently presented important work at the annual UK PROMs Conference in Birmingham (pictured left). She showcased a collaborative project between Immunodeficiency UK and Leeds Beckett University.

In phase two, a further 23 participants took part in cognitive interviews to evaluate the draft PROM—ensuring it is comprehensive, clear, and meaningful to patients.

Some additional development work will follow, after which the final version of the PROM will be tested through a large-scale survey in partnership with Immunodeficiency UK. This next phase will ensure it is robust and fit for use in both clinical care and research.

This work is especially important because it centres patients’ voices and experiences—capturing what truly matters to those living with antibody deficiency. The PROM is designed to support patient-centred care, shared
decision-making, and better quality of life outcomes.

First-timers are welcome! Ask friends and family if they would like to support a good cause. We would like to extend our sincere thanks to everyone who has taken part so far. Your insights are helping shape a tool that will make a real difference.