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

dataset

posted on 2021-01-13, 17:15 authored by Philip PowellPhilip Powell, Jill CarltonJill Carlton, Donna RowenDonna Rowen, John Brazier

Supplementary files to support a manuscript on the 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

The research received ethical approval from the UK National Health Service (NHS REC reference: 18/SW/0055).

Funding

project HERCULES (Duchenne UK)

History

References

https://eprints.whiterose.ac.uk/172776/

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

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

Usage metrics

Read the peer-reviewed publication

Development of a New Quality of Life Measure for Duchenne Muscular Dystrophy Using Mixed Methods

School of Health and Related Research - HEDS

Keywords

Duchenne muscular dystrophy (DMD)Patient reported outcome measures (PROMs)Quality of life questionnaire Questionnaire development Psychometrics/instrumentation Neurology and Neuromuscular Diseases

Licence

CC BY 4.0