Attending the RD-Connect annual meeting: the patient perspective

12 March 2015


RD-Connect is an international project, funded by the European Commission. The project aims to create a worldwide registry of rare disease patient data and biological samples. While this would create a valuable resource for research; EURORDIS and the Patient Advisory Council (PAC) monitor the project to ensure it is useful for rare disease patients and fulfills any legal, ethical and social concerns.

RD-Connect photo

These concerns include the security of patient data, the use of incidental or unexpected findings in data, and whether data from deceased patients should be used, despite them being unable to give consent. There are many complexities in data collection and consent processes, and we are working to find the best solutions for patients.

The Conference

Last week’s conference was an annual update, giving attendees an overview of the work done so far. The first day was for training workshops, giving us the chance to use the platform created so far, and see how data would be accessed and used.

The next two days were split into talks looking at bioinformatics (the use of data), development of analytical tools to search data, ethical issues, and management-led talks looking at the implementation and running of the project. The final talks gave a summary of the conference and set the goals for the next year.


Much of the work so far has been around the more technical side of the RD-Connect platform. The computer programming and appropriate data security are being developed to create an online platform that is accessible for approved research teams, yet protects sensitive patient data. The ideal platform would collate data from any medical centre worldwide and provide anonymous data only for research teams who had ethical approval for their use of the data.

In the last year, the PAC has contributed to guidelines on informed consent, a data sharing charter and an ethical framework for the project. The work is far from over though, with plans for next year including a Delphi exercise to poll rare disease patient leaders for their views and input. The role of the PAC will also be expanded in 4 areas:

–          Informed consent and data sharing

–          Undiagnosed patients and incidental findings

–          Involvement of children

–          A risk based ethical review

Next year will be the midpoint for RD-Connect, and so will start the wider dissemination of project results. This means that there should be more information soon we can share about its progress and impact for rare diseases worldwide.

Oliver (  ) is representing AKU patient opinions, and would be very keen to hear your views on the four areas for next year’s work. Further information about the AKU Society can be found here.

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