Psychometric data for 'A new quality of life questionnaire for use in Duchenne muscular dystrophy: the DMD-QoL'

posted on 15.09.2020 by Philip Powell, Jill Carlton, Donna Rowen, John Brazier
Research data (DMDQoLPsychometric.csv) collected in an online survey of boys and men with Duchenne muscular dystrophy (DMD) in order to support the psychometric analysis and development of a new quality of life questionnaire in DMD: the DMD-QoL.

The research is part of the Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy project and is funded as part of project HERCULES led by Duchenne UK.

This data supports a manuscript in submission. A protocol for the work is available online: Powell et al. (2019), http://dx.doi.org/10.1136/bmjopen-2018-023685

All necessary approvals were acquired to use the patient reported outcome measures in this dataset. The research received ethical approval from the UK National Health Service (NHS REC reference: 18/SW/0055).

An associated data dictionary (dataDictionaryDMDQoLPsychometric.docx) is provided.


project HERCULES (Duchenne UK)



The project has ethical approval and have included the number in the description field


The data complies with the institution and funders' policies on access and sharing

Sharing and access restrictions

The data can be shared openly

Data description

  • The file formats are open or commonly used

Methodology, headings and units

  • Headings and units are explained in the files