Informed consent in the RD-Connect platform: preparing guidelines for the information of participants/donors

<p>The Rd-Connect project aims at building up a platform for the linking and exchange of data among researchers working in the field of rare diseases (RD), in particular in RD patient registries, biobanks and bioinformatics. </p> <p>The increase in registration activities and data sharing provides unique opportunities in RD research, but it also brings new challenges in balancing a patient’s right to privacy and integrity.</p> <p>Informed consent and the review of research protocols by a research ethics committee are the standard ways adopted by modern societies to warrant validity of research, respect for persons and their autonomy.</p> <p>However, both process can be costly and time consuming, especially in retrospective research when re-conset of all subjects may be difficult to achieve. </p> <p>In Rd-Connect a discussion on the best models for informed consent has been undertaken by researchers, RD patients, health institutions and industry representatives. </p> <p>The ongoing debate started in Brussels during the Stakeholder Conference (21 and 22 October 2013) and will continue in Rome, during a workshop detailing consent guidelines (23 and 24 April 2014).</p> <p> </p> <p> </p> <p>