README: RNA-PAR Alopecia Community Survey 2025 (quantitative data) ================================================== ABOUT THE DATASET ================================================== Title: RNA Bioscience for Participatory Alopecia Research (RNA-PAR): Alopecia Community Survey 2025 Creators: Tracy Branagan, Liverpool John Moores University, ORCID 0009-0008-0327-3211 Kehinde Ross, Liverpool John Moores University, ORCID 0000-0003-0252-1152 Lauren Tonge, Liverpool John Moores University Affiliations: School of Pharmacy and Biomolecular Sciences and Institute of Health Research, Liverpool John Moores University Rights holder: Liverpool John Moores University Year of publication: 2026 ================================================== DESCRIPTION ================================================== This record contains the anonymised responses to the closed (multiple choice and rating) questions of the survey. Free-text responses are not included (see Access below). The dataset contains responses to an anonymous online survey of UK adults (aged 18 and over) with lived experience of any form of alopecia. 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. It was co-designed with members of the Alopecia UK Lay Research Panel, a lived experience research assistant, and the University of Liverpool Department of Sociology. The survey ran on JISC Online Surveys for four weeks from 30 October 2025 to 30 November 2025. The dataset holds 163 responses. The data cover: - type of alopecia, age at onset, formal diagnosis - treatment and support received, and experience of it - support group attendance and access to health services - awareness of, interest in and views on RNA-based treatments - 16 agree/disagree statements on emotions, body image and mental health, and on daily life, relationships and work - demographics: ethnic group, type of area lived in, age group, gender identity, disability or long-term condition, caring responsibilities Access: The quantitative data are openly available. Free-text responses are not included because they may contain identifying details. They are held securely by the research team and are not available. How to cite this record: Branagan, T., Ross, K. and Tonge, L. (2026) RNA Bioscience for Participatory Alopecia Research (RNA-PAR): Alopecia Community Survey 2025 [dataset]. Liverpool John Moores University Data Repository. DOI: [TO ADD when issued] ================================================== CONTACT DETAILS ================================================== PI: Tracy Branagan, T.D.Branagan@ljmu.ac.uk Alternative contact: Dr Kehinde Ross, O.K.Ross@ljmu.ac.uk ================================================== TERMS OF USE ================================================== The data and documentation are licensed under Creative Commons Attribution 4.0 International (CC BY 4.0). Users must not attempt to identify any participant. ================================================== PROJECT AND FUNDING INFORMATION ================================================== Project title: RNA Bioscience for Participatory Alopecia Research (RNA-PAR) Project funding dates: 1 August 2024 to 31 July 2025 Funder: Research England Participatory Research Fund (PRF), awarded via Liverpool John Moores University Partners: University of Liverpool; Alopecia UK ================================================== CONTENTS ================================================== Files in this record: - RNAPAR_survey_README.txt: this file - RNAPAR_survey_quantitative.csv: the data. Comma-separated values, UTF-8. One row per participant (163 rows), 49 variables. - RNAPAR_survey_data_dictionary.csv: variable names, full question wording, response options and missing value coding for every variable in the data file. - RNAPAR_questionnaire.pdf: the full survey questionnaire as presented to participants [include if depositing] The files open in any spreadsheet or statistics software. Variable names follow the questionnaire numbering (q1 to q24). Questions where participants could tick more than one answer (q1, q4, q24) are split into one 0/1 column per option. ================================================== METHODS ================================================== Design: cross-sectional anonymous online survey, taking about 15 to 20 minutes to complete. Questionnaire: questions on quality of life were informed by two established tools, Hairdex and WHOQOL-BREF but were written for this study and are not those instruments. Further questions covered knowledge of and views on RNA-based therapies. Most questions were closed, with optional free-text boxes. Recruitment: participants self-identified from a non-targeted online advert on the Alopecia UK website and School of Pharmacy and Biomolecular Sciences social media. Eligibility (aged 18 or over, living in the UK, personal experience of alopecia) was self-declared. Consent: participants read an online information sheet and ticked a consent statement before they could see the survey questions. No names, contact details or other direct identifiers were collected. Ethics: approved by the Liverpool John Moores University Research Ethics Committee, reference 25/PBS/005. Data processing for this dataset: exported from JISC Online Surveys as CSV. Survey platform response IDs were replaced with sequential participant codes (P001 to P163). All free-text answers were removed, including all Other (please specify) text and answers to questions 2 (age at onset), 5, 8, 11, 13, 16, 17 and 18. Ethnic group categories with very few respondents were combined (see data dictionary). For q23, respondents who answered Yes and gave further detail were exported with the detail prompt as their answer; these were recoded to Yes. Empty section heading columns from the export were removed. Analysis: descriptive statistics for closed questions and thematic analysis of free-text responses.