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.

Please watch the video played at the EURORDIS Black Pearl Award Ceremony 2019

Publications

Sharing is Caring: The Case for CompanyLevel Collaboration, Anthony J. Hatswell & Fleur Chandler. Published in Pharmacoeconomic Modelling.

REVIEW: Open Access – A review of quality of life themes in Duchenne muscular dystrophy for patients and carers. Uttley et al. Health and Quality of Life Outcomes.

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. Published in 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. HEDS Discussion Paper Series. Powell P, Carlton J, Woods H & Mazzone P (2019).

Collaboration – the missing piece in the access puzzle? By Emily Crossley & Fleur Chandler. Published in PharmaTimes magazine (March 2018).

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

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

A watchdog group sets aside emotions to assess drugs’ value. Patients say their lives are more than a number Published in STAT News (August 2019).

Posters

Title Category
ScHARR ISPOR Poster 2018 Poster Download (0MB)
ScHARR ISPOR Europe Poster 2018 Poster Download (0MB)
ISPOR Tokyo Poster 2018 Poster Download (0MB)
ECRD Poster, Vienna - May 2018 Poster Download (0MB)
ScHARR ISOQOL Poster 2018 Poster Download (0MB)
University of Leicester ISPOR Poster 2018 Poster Download (0MB)