CureDuchenne is the world’s leading research and support organization devoted to eradicating Duchenne and Becker muscular dystrophy (DMD/BMD). Duchenne is a rare form of muscular dystrophy that affects
approximately 0.006% of the US population, which means the available information that could potentially lead to a cure is scarce and difficult to organize.
CureDuchenne needed a way to contact patients and mothers carrying the gene in an unobtrusive, systematic way to collect information and relevant samples researchers need if progress was going to be made in the search for a cure.
The Solution
Worthwhile worked with CureDuchenne to create a patient survey portal as well as an administrative data hub that empowered the CureDuchenne team with tools for sensitive and top-tier patient onboarding, validation, and sample scheduling, as well as insight into ongoing patient engagement. Robust testing and modernized infrastructure enabled iterative development at high velocity, and multilingual support allowed reaching a broader audience.
Worthwhile provided robust reporting tools, allowing the identification of patient subcategories and trends. Worthwhile enabled CureDuchenne to make patient data meaningful and actionable, allowing researchers to make meaningful connections between survey responses and gathered biobank samples. Today, the cure for DMD is closer than ever.
