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RNAPAR_survey_README.txt

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indexcodes.txt

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RNAPAR_survey_data_dictionary.csv

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RNAPAR_survey_quantitative.csv

data Dataset archive 7 disk0/00/00/02/85 2026-10-08 14:04:51 2026-10-08 14:04:51 2026-10-08 14:04:51 data_collection show researchonline@ljmu.ac.uk 7 Branagan Tracy 0009-0008-0327-3211 Ross Kehinde 0000-0003-0252-1152 Tonge Lauren Alopecia UK University of Liverpool, Centre for Ageing and the Life Course (CALC) pharmacy public Institute for Health Research (IHR); alopecia; alopecia areata; hair loss; RNA therapeutics; RNA-based treatment; quality of life; patient and public involvement; lived experience; patient perspectives; survey data; dermatology; 3202 Clinical sciences; 4203 Health services and systems; 4206 Public health; 330405 Public participation and community engagement; 3214 Pharmacology and pharmaceutical sciences; 5203 Clinical and health psychology Depositing user's licence comment: 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. 2026-10-07 published 10.24377/LJMU.d.00000285 Liverpool John Moores University (LJMU) Liverpool John Moores University Liverpool John Moores University (LJMU) 3202 3214 330405 4203 4206 5203 Design: cross-sectional, anonymous online survey, run on JISC Online Surveys for four weeks (30 October to 30 November 2025. Studied population: adults aged 18 and over living in the UK with personal experience of any form of alopecia, current or past. Eligibility was self-declared. The unit of observation is the individual respondent. Sampling: non-probability, self-selected sampling. Participants responded to non-targeted adverts on the Alopecia UK website and the social media channels of the School of Pharmacy and Biomolecular Sciences, Liverpool John Moores University. The advert asked people to share it with others, so some recruitment will have been by word of mouth. The target was a minimum of 30 responses; 163 were received. As participants self-selected, largely through an alopecia charity's networks, the sample is not representative of all people with alopecia in the UK. Questionnaire: co-designed with members of the Alopecia UK Lay Research Panel, members of the wider alopecia community in the UK, a lived experience research assistant and the University of Liverpool Department of Sociology. It covered experiences of alopecia, diagnosis, treatment and support, access to services, awareness of and views on RNA-based therapies and quality of life. The 16 quality of life statements were informed by two established tools, Hairdex and WHOQOL-BREF but were written for this study and are not validated scales. Demographic questions were optional. The survey took about 15 to 20 minutes and included optional free-text questions, which are not part of this dataset. Consent: participants read an online information sheet and ticked a consent statement before they could see the questions. Data processing: responses were exported from JISC Online Surveys and anonymised as described in the ethics section. Questions allowing more than one answer were converted to one 0/1 variable per option. Full details are in the README and data dictionary. United Kingdom English English The data were collected through an anonymous online survey approved by the Liverpool John Moores University Research Ethics Committee (reference: 25/PBS/005). Participants gave informed consent before taking part, and no names, contact details or other direct identifiers were collected. The survey included health information and ethnic group, which are special category data under UK GDPR, so further steps were taken to reduce the risk of indirect identification before sharing. All free-text responses were removed, as these could contain identifying details such as exact ages, places or the names of services and support groups. Survey platform response IDs were replaced with sequential participant codes. Ethnic group categories with very few respondents were combined into broader groups so that no category contains a single participant. Age is recorded only in bands. The remaining data are anonymous and are shared openly under a CC BY 4.0 licence. Users must not attempt to identify any participant. The free-text responses are held securely by the research team and are not available. 2025-10-30 2025-11-30 2026-10-07