Project HERCULES publications

Articles and podcasts by the Project HERCULES team.


A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy. Powell PA, Carlton J Quality of Life Research (2022)

Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN. Carlton J, Powell PA & Project HERCULES Carer Group Health and Quality of Life Outcomes (2022)

Deriving a preference-based measure for people with Duchenne muscular dystrophy from the DMD-QoL. Rowen D, Powell PA, Mukuria C, Carlton J, et al. Value in Health (2021)

Development of a new Quality of Life measure for Duchenne muscular dystrophy using mixed methods – The DMD-QoL. Powell PA, Carlton J, Rowen D, Chandler F, et al. Neurology (2021)

Life expectancy in Duchenne muscular dystrophy: Reproduced individual patient data meta-analysis Broomfield J, Hill M, Guglieri M, Crowther M, Abrams KA Neurology (2021)

Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments. Powell PA, Carlton J, Buckley Woods H & Mazzone P. Health and Quality of Life Outcomes (2020)

The Impact of Payer and Reimbursement Authorities Evidence Requirements on Healthcare Solution Design for Muscular Dystrophies. Lebmeier M, Chandler F, Godfrey J & Dando J (2020)

Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy: a mixed-methods study protocol. Powell PA, Carlton J, Rowen D, et al. BMJ Open (2019)

Patient reported outcome measures of quality of life in Duchenne muscular dystrophy (DMD): a systematic review of content and structural validity using COSMIN. Powell P, Carlton J, Woods H & Mazzone P HEDS Discussion Paper Series (2019)

A review of quality of life themes in Duchenne muscular dystrophy for patients and carers. Uttley et al. Health and Quality of Life Outcomes (2018)

Collaboration – the missing piece in the access puzzle? Crossley E & Chandler F. PharmaTimes (March 2018)

Improving access to new treatments in rare diseases by Emily Crossley. Published in NICE Blog (June 2018)

Sharing is Caring: The Case for Company Level Collaboration, Hatswell A & Chandler F. Published in Pharmacoeconomics (2017)


Podcast: Decoding Duchenne – Project HERCULES. Listen to Emily Crossley, Fleur Chandler and Josie Godfrey speak about Project HERCULES