Global Decentralized Registry Improves the Patient and Caregiver Experience

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

• This registry was web-based and possessed many outdated features
• To improve recruitment, inclusion, engagement and compliance, PPMD needed a platform that provided the remote technology that participants and caregivers wanted

To introduce a remote research approach allowing data to be collected at the participants’ home, reducing participant and caregiver burden, THREAD offered:

• an omni-channel, mobile solution that facilitates better participant/caregiver/clinician engagement globally
• technology for PPMD caregivers and advocates to capture eSource data when interacting with patients
• deep experience creating intuitive, effective participant engagement solutions
• experience to support the patient engagement approach and support designing a global registry