Project HERCULES is a multi-stakeholder collaboration for Duchenne Muscular Dystrophy (DMD). This project aims to build together the evidence required by Health Technology Assessment (HTA) bodies for medicines to treat rare diseases.

To achieve this, pharmaceutical companies, charities, academics, patient organisations and experts collaborate in Project HERCULES for Duchenne. A session at this year’s World Orphan Drug Congress in Barcelona introduced the project status one year after the start of the collaboration.

Therefore, Josie Godfrey (JG Zebra Consulting) moderated a panel discussion with Emily Crossley (Duchenne UK), Fleur Chandler (Project HERCULES Steering Group), Annika Bergman (Sarepta Therapeutics Inc) and Meriem Bouslouk-Marx (MBM Future Health). The panellists discussed the benefits of this innovative collaboration. These include engaging  patients, accessing new data more easily, avoiding duplication and ultimately obtaining evidence recognised by HTA bodies.

The National Institute of Health and Care Excellence (NICE) is the first HTA body the project aims to reach. Meriem Bouslouk-Marx presented the G-BA evidence requirements for orphan drugs in Germany. Moreover, the panel explained the encountered challenges in the implementation of a multi-stakeholder project.

However, one major step forward was taken because Project HERCULES is the recipient of the 2019 EURORDIS Black Pearl Award for Patient Engagement. Congratulations to the fantastic team!



For more information: Project HERCULES