Returning individual results to participants is gaining momentum as a core expression of patient-centered research. In rare disease development, where participants often contribute significant time, personal risk, and emotional investment, access to personal study data is increasingly seen as part of a respectful and transparent research relationship. When done thoughtfully, it reinforces trust, deepens engagement,... The post Returning Patient Data in Rare Disease Studies appeared first on Prem
Returning Patient Data in Rare Disease Studies
Victoria Watts
