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Global Rare Disease Studies Recruitment and Retention Report 2020: Baseline Challenges & Perspectives, Recruitment Methods, Retention Practices, Study Data


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Designing for Recruitment and Retention in Rare Disease Studies report takes a deep dive into two areas impacting the success of these studies: recruitment and retention. Given the importance of each rare disease patient, these activities are time-intensive and resource-heavy. We asked 125 respondents involved in these activities about the challenges they face, methods and support services used, and their perspectives and practices regarding patient-friendly alternatives to the clinical setting.
An area of a clinical study that is gaining momentum is a rare disease. The publisher acknowledges pharma s growing interest in this space. While this means opportunity for the drug development industry, the unique nature of rare disease studies is burdensome. Greater challenges are baked into rare disease studies compared to typical studies: very small patient pools, specialized protocols, difficult- ....

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