Immunodeficiency UK continues to play a vital role in advancing research into primary immunodeficiencies by connecting researchers with our engaged patient community.
Our recent collaboration with doctoral researcher Danielle Musson at Leeds Beckett University demonstrates how we’re helping bridge the gap between academic research and patient experience.
The study, which aims to refine quality of life measures for people with antibody deficiencies, shows how we’re ensuring patient voices are central to developing better care standards. By leveraging our established networks and trusted relationship with the immunodeficiency community, we’ve been able to help the Leeds Beckett research team connect with people who can provide invaluable insights from their lived experience.
This partnership showcases how patient organisations can effectively support important academic research while ensuring patient voices are heard. Through our newsletter, social media channels, and direct community engagement, we’ve helped the research team reach those whose experiences matter most.
Our work supporting research recruitment is just one example of how Immunodeficiency UK continues to advocate for and serve our community, helping to advance understanding and improve care for people living with primary immunodeficiencies.
Danielle said: “Patient-reported outcome measures (PROMs) allow researchers and clinicians to capture the unique experiences and challenges faced by patients living with a health condition. By directly assessing the impact of symptoms and treatment from the patient’s perspective, PROMs can drive improvements in quality of life and person-centred practice. Through our collaborative work with Immunodeficiency UK, we are developing and validating a PROM that captures the aspects of quality of life that are important to patients living with a primary and secondary antibody deficiency. We would like to thank Immunodeficiency UK for their invaluable support, especially in facilitating patient recruitment and providing an essential advisory role that has helped guide this research.”
