Engaging rare disease patients and caregivers in research through a two-sided technology platform

Here we describe how our real-world data (RWD) platform facilitates patient engagement, providing both direct and indirect benefits to participants and caregivers. Active research engagement enables patients to partner with researchers to ensure data depth and quality, expand knowledge of their condition beyond what is captured in medical records, identify outcomes that would most improve patients’ quality of life, and jumpstart or expand robust patient cohorts. This poster was presented at the National Organization for Rare Disorders (NORD) Breakthrough Summit in October 2021.