This dataset contains anonymised responses from 163 UK adults with lived experience of alopecia to an online survey run as part of the RNA Bioscience for Participatory Alopecia Research (RNA-PAR) project at Liverpool John Moores University. The survey was co-designed with members of the Alopecia UK Lay Research Panel, a lived experience research assistant and the University of Liverpool. It ran on JISC Online Surveys in November 2025. Participants were recruited through the Alopecia UK website and university social media.

The survey explored experiences of alopecia and its treatment, the impact of hair loss on quality of life, and views on RNA-based therapies as a possible future treatment. The dataset covers type of alopecia, diagnosis, treatment and support received, support group use and access to services, awareness of and interest in RNA-based treatments, and 16 agree/disagree statements on emotional wellbeing, body image, daily life, relationships and work. Demographic variables include age group, gender, ethnic group, type of area lived in, disability and caring responsibilities.

Only responses to closed questions are included. Free-text answers have been removed to protect participant anonymity. A data dictionary and the full questionnaire accompany the data.