PATIENTS' DATA POWERING PROGRESS

A Patient-Centric Approach to Consent

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A Patient-Centric Approach to Consent

This paper explores RARE-X’s patient-centric approach to developing flexible and easy-to-understand Consent Agreements and Data Sharing Agreements. This novel approach is another way RARE-X is lowering the barriers to participation for rare disease patients while protecting their privacy and allowing them to retain ownership of their own data.

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