Awards
Project HERCULES was awarded the prestigious EURORDIS Black Pearl Award for Patient Engagement in 2019, as recognition of the unique approach to collaboration that Duchenne UK and our partner organisations have adopted. More information is available here.
Publications
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.