NeurOmics project reaches a significant milestone in its data-sharing plans
Published: July 16, 2014NeurOmics is a consortium of European and worldwide experts in neuromuscular and neurodegenerative conditions, bioinformatics and –omics technologies. NeurOmics is providing some of the first data to be integrated into(…)
Second RD-Connect jamboree focuses on variant calling and analysis
Published: July 2, 2014From 30 June to 2 July 2014 Christophe Béroud’s team from Aix-Marseille University Medical School hosted 30 participants from Europe, the USA and Australia for the second RD-Connect data analysis(…)
First partner meeting of the Global Alliance for Genomics and Health shows strength of international efforts in data sharing and standards across rare disease and cancer
Published: March 4, 2014RD-Connect is excited to be participating in the inaugural partner meeting of the Global Alliance for Genomics and Health, taking place at the Wellcome Trust offices in London, UK. The(…)
PhenomeCentral “matchmaking” portal launched on Rare Disease Day
Published: February 28, 2014A new online system to match up patients with similar genotypes and phenotypes is being launched on Rare Disease Day. PhenomeCentral connects clinicians and scientists worldwide with others working on(…)
RD-Connect one year on
Published: January 31, 2014The three linked projects funded by the European Commission as flagship “omics” research projects under the International Rare Diseases Research Consortium are now just over a year old. As they(…)
Working together on open standards and interoperability: RD-Connect joins Global Alliance for sharing genomic and clinical data
Published: June 21, 2013RD-Connect has joined over 70 institutions across the world in signing up to the Global Alliance, a new initiative to encourage sharing of linked genetic and clinical data. Inspired by(…)
Enabling data sharing: two publications highlight ethical and legal questions to be addressed
Published: June 18, 2013The 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(…)
Concerns raised over draft of EU data protection regulation
Published: February 25, 2013A 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(…)
Fighting Rare Diseases: 38 million EUR for rare disease research
Published: January 24, 2013A 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(…)