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.
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.
Funding
project HERCULES (Duchenne UK)
History
Ethics
The project has ethical approval and have included the number in the description field
Policy
The data complies with the institution and funders' policies on access and sharing