Researchers Seek Participants for Erb’s Palsy Study

Local research initiative aims to involve those affected by Erb’s Palsy

Researchers from Leeds Teaching Hospitals and the University of Leeds are inviting young people, adults, parents, and carers affected by Erb’s Palsy to join a new Patient and Public Involvement and Engagement (PPIE) network. The network is intended to ensure that the experiences of those living with the condition help guide future research efforts.

Understanding Erb’s Palsy

Erb’s Palsy, also known as brachial plexus birth injury, is a condition caused by nerve damage during birth. It affects the nerves responsible for movement and sensation in the shoulder, arm, and hand. The injury typically occurs when a baby’s neck is stretched during a difficult delivery.

While some children recover significant movement over time, others may experience ongoing weakness, limited mobility, or long-term disability in the affected arm. Many individuals continue to live with the effects of Erb’s Palsy throughout their lives.

Purpose of the PPIE Network

The newly formed PPIE network aims to involve people with direct experience of Erb’s Palsy in shaping research priorities and approaches. The researchers want to understand what matters most to those affected and to collaborate with them from the outset of any research projects.

They are particularly interested in hearing from:

• Young people, adults, and parents affected by Erb’s Palsy
• Families and carers with lived experience of the condition
• Individuals from ethnically diverse communities, who are often under-represented in research

Participation Details

Participation in the network can be flexible, with options to engage online, in person, or via telephone or one-to-one conversations, depending on individual preference. The researchers have emphasised the importance of including voices from ethnically diverse backgrounds.

Those interested in joining the PPIE network can register through the following link: https://forms.office.com/e/uq9GcaNYQ7

This initiative represents an effort to make medical research more inclusive and responsive to the needs of people living with Erb’s Palsy.

Source: Doing Good Leeds