Psychometric data for 'A new quality of life questionnaire for use in Duchenne muscular dystrophy: the DMD-QoL'
datasetposted on 2020-09-15, 18:42 authored by Philip PowellPhilip Powell, Jill CarltonJill Carlton, Donna RowenDonna 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.
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
- The file formats are open or commonly used
Methodology, headings and units
- Headings and units are explained in the files