Returning Patient Data in Rare Disease Studies
Victoria Watts
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