Fluctuating salience in those living with genetic risk of motor neuron disease: A qualitative interview study.
Jade HowardFadhila MazanderaniKaren Forrest KeenanMartin R TurnerLouise LocockPublished in: Health expectations : an international journal of public participation in health care and health policy (2024)
People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel.