A new international collaboration is putting the hearing experiences of people living with Alport at the centre of research.
A pioneering project on hearing in Alport
Led by the University of Birmingham, HEAR-ALPORT is an international research project exploring the hearing journey of people living with Alport syndrome to develop new tools for use in future Alport clinical trials.
Centering patients’ lived experience
Hearing loss is more than a hearing test result. HEAR-ALPORT will work with people living with Alport and their families to understand its impact on everyday life, helping researchers develop the first PROMs and ObsROs specifically for Alport-related hearing loss.
What are PROMs?
Patient-Reported Outcome Measures (PROMs) complement hearing tests by capturing the everyday impact of hearing loss, including listening fatigue, education, work, relationships and emotional wellbeing —things hearing tests alone cannot measure.
What are ObsROs?
Observer-Reported Outcome Measures (ObsROs) are questionnaires completed by a parent or caregiver to help researchers understand how hearing loss affects a person’s daily life.
Sarah Hughes, Programme Co-Lead, commented:
“PROMs and ObsROs help us understand not only how well someone hears, but how hearing loss affects their everyday life. By listening to patients and families, we can develop measures that reflect what truly matters to them.”
Sarah Hughes, Programme Co-Lead
A truly global collaboration
Supported by the Stoneygate Foundation, Kidney Research UK and Alport UK through the Alport Research Hub, HEAR-ALPORT is a global collaboration uniting researchers, clinicians, patient organisations and people living with Alport.
“This study is among the first of its kind to explore and capture the impacts of hearing loss on people with Alport syndrome, then generate new clinical trial outcomes reflecting these experiences. Our aim is to make new drug development more focussed on this key, understudied area of health that impacts the lives of people living with Alport syndrome.”
Professor Devin Peipert, Programme Co-Lead
Next steps: the global recruitment
In the coming months, HEAR-ALPORT will begin recruiting people living with Alport and their families from around the world. Stay tuned to find out how you can take part and help shape the future of hearing research.