Global Rare Disease Decentralized Registry Improves Participant/Caregiver Experience And Increases Engagement

Challenge

For 13 years, PPMD has kept and managed the world’s largest registry of patient reported outcomes for Duchenne Muscular Dystrophy

• This registry was web-based and possessed many outdated features, including the inability to collect data remotely, leading to lower-than desired registration numbers and limited engagement from registrants
• To improve recruitment, inclusion, engagement and compliance, PPMD needed a platform that provided the remote technology that participants and caregivers wanted

To find out the solution and results, download the available case study.

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