Enabling data sharing: two publications highlight ethical and legal questions to be addressed

18 June 2013

The rare disease community is currently debating the ongoing reform of the EU Data Protection Regulation and other topical questions relating to consent and privacy safeguards in medical research. In light of this, two short articles by RD-Connect partners have been published. These discuss the importance of maintaining the exception for research data in the data protection regulation, and propose a simplified, risk-based ethical review procedure. These recommendations would enable the continuation of data sharing and make the ethical process for information-based research more straightforward.

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Concerns raised over draft of EU data protection regulation

25 February 2013

A large group of patient organisations and research consortia involved in the rare disease field has today released a public statement expressing deep concern over a draft of the the proposed new legal framework for the protection of personal data in the EU, the so-called Data Protection Regulation. It is feared that if the regulation is passed by the European Parliament in the wording released on 16 January 2013 by Jan Philipp Albrecht (Greens/European Free Alliance, Germany), this could spell the end of progress in health research in Europe, in particular the end of research into rare diseases.

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Fighting Rare Diseases: 38 million EUR for rare disease research

24 January 2013

A multi-million Euro initiative is bringing together researchers from across the world to develop new diagnostic tools and new treatments for people with rare diseases and to connect research data in this area on a global scale. The EU has announced 38 million Euro funding for research towards new treatments and for the development of a central global rare disease hub involving 70 institutions that will allow scientists to share data from their genomics research projects. This will lead to faster diagnosis and better treatments and improve the quality of life for patients with rare diseases.

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