RD-Connect ID-Cards of biobanks and registries- making RD data FAIR.pptx

<p>The RD-Connect ID-Cards (http://catalogue.rd-connect.eu) aims at concentrating sparse information on RD patients in one unique source by showing the number of samples/cases included in biobanks and registries, providing a first gateway towards more intense data sharing, and increasing the integration of biobanks and registries.<br></p

Poster Barcelona RECs

Research Ethics Committees have a key role in the governance and oversight of research projects conducted on old data and on the use of platforms for data sharing on rare diseases. However RECs members usually do not have any expertise on linked data technologies. <div><div>  In connection with Elixir, RD-Connect will make proposals to undertake a pilot training program for RECs on the most relevant ethical aspects of Linked Data technology, in particular:</div><div><br></div><div>•The values and principles lying behind a data linkage approach</div><div>•The risks and benefits of a data linkage based project</div><div>•The  implications for informed consent and patient participation</div><div><br></div><div>At the same time, REC evaluations and Informed Consent  should be linked to other research activities and become  computer readable, in order to automate the sharing of data for which consent or REC approval is available. </div></div

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> </p

RD-Connect online catalogue of biobanks and registries: what do we add to the existing?

<p>RD_Connect is a project aimed at increasing data sharing among registries, biobanks and bioinformatics. In this framework, we are developing an online catalogue of registries and biobanks which are relevant for research on rare diseases. As compared to existing inventories, the RD-Connect catalogue should offer more detailed information on the content of each database (N of samples/registered cases for a certain disease) and be regularly updated by an automatic alert system and through the active participation of biobanks/registries.</p> <p>Also, the catalogue will promote networking interaction of its members.</p> <p>The poster describes the main aims of the catalogue and the strategy used to invite biobanks and registries to be listed into the catalogue.<br><br></p> <p> </p