The Charter, together with the template for general Material Transfer Agreement (MTA) and Data Transfer Agreement (DTA) constitutes an enabling tool to improve the governance and audit of sharing data and specimens across multiple international settings. The documents introduce in simplified language a consistent set of principles that will improve interoperability nationally and internationally.
To ensure that data on the RD-Connect Platform are shared only in an ethical way, all users are required to sign the RD-Connect Code of Conduct according to legal requirements, ethical principles as well as patient and scientific needs.
In March 2014, the Council issued a consultation document and asked for views on the proposed amendments. A collaborative response
was coordinated by the Rare Disease Patient and Ethics Council (RD-PEC). It emphasised the importance of balancing individual citizen's right to privacy and their right to benefit from medical treatment and prevention of disorders through scientific progress. We emphasised the scarcity of biological materials within rare disease research and the importance of being able to re-use samples for more than one research project, including making samples available across different countries and different disease groups.