IRDiRC NOVEMBER 2014 UPDATE

for Executive Committee, Scientific Committees, and Working Groups

 

The 2nd IRDiRC Conference

The 2nd IRDiRC Conference took place in Shenzhen, China, on 7-9 November 2014. Read the summary report and access the photos and selected presentations here. This page will be updated when more materials and information are received.

BGI News also reported on this event, as well as a number of Chinese media, including Bioon and Lian Cheng Xin Wen (the latter two articles in Chinese).

Vice Chair of the Executive Committee

Congratulations to Professor Hugh Dawkins who has been elected as the Vice-Chair of the Executive Committee.

IRDiRC new documents

• Executive Committee: report of the teleconference held on October 2, 2014

• Diagnostics Scientific Committee: report of the teleconference held on October 7, 2014

• Therapies Scientific Committee: report of the teleconference held on October 6, 2014

• Working Group on Genome/Phenome: report of the teleconference held on September 30, 2014

• Working Group on Sequencing: report of the teleconference held on October 13, 2014

• Working Group on Biobanks: report of the teleconference held on October 20, 2014

Working Group on Population Controls on Variant Datasets: report of the teleconference held on October 28, 2014

Upcoming IRDiRC meetings and teleconferences

• December 3, 2014: teleconference of the Working Group on Orphan-Drug Development and Regulatory Processes

• March 16, 2015: meeting of the Executive Committee in Madrid, Spain

• June 5, 2015: meeting of the Diagnostics Scientific Committee in Glasgow, UK

• June 5, 2015: meeting of the Interdisciplinary Scientific Committee in Glasgow, UK

• June 5, 2015: meeting of the Therapies Scientific Committee in Glasgow, UK

• June 6, 2015: meeting of the three Scientific Committees in Glasgow, UK

News published on the website

• Chemical drugs could be an alternative to gene therapy to treat certain genetic diseases

• The FDA has awarded fifteen grants to stimulate drug, device and biological product development

• Creation of a mitochondrial dysfunction transcriptome using publicly shared data

Disease Manifestation Network: a novel phenotype network database

• Article illustrates treatment of advice on adaptive clinical trial designs by the EMA

Rare Diseases Clinical Research Network in the US awarded $29 million to study more than 200 rare diseases

• NIH revises its genomic data sharing policy

IRDiRC-related calls

• The National Institutes of Health (NIH, USA) has launched two funding opportunities announcements on eosinophil associated disorders, one of them encouraging exploratory and developmental research projects by providing support for the early and conceptual stages of these studies.

• The Canadian Institutes for Health Research (CIHR, Canada) has launched new investigator research grants in child and youth health.

Website updates

• The IRDiRC presence at conferences section has been updated with the addition of three presentations about IRDiRC during the E-Rare Symposium, the Fundación ARECES-VHIR Rare diseases Conferences and the Clinical Information Modeling Initiative.

 • The IRDiRC in the news section has been updated with the addition of five articles mentioning IRDiRC from EORTC, Fundamental Diseases.net, The Parliament, les Prix du Québec and Orphan Druganaut Blog.

Other News

• Barbara Cagniard will be leaving the IRDiRC Scientific Secretariat at the end of December 2014 and we wish her all the best in her future endeavours.

Antonia Mills joined the IRDiRC Scientific Secretariat as Project Manager.

Sophie Höhn, Communication manager, IRDiRC Scientific Secretariat, IRDiRC, Plateforme Maladies Rares / Rare Disease Platform, 96 rue Didot, 75014 PARIS, FRANCE, Tel: +33 1 56 53 81 37, Fax: +33 1 56 53 81 38

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