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RDA Alliance: A ‘Health Data’ Research Group

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Following two successful events at the RDA Plenary 6 in Paris in September 2015, MD-Paedigree partners Lynkeus and Athena RC attended the 7th RDA Plenary Meeting, held on February 29th to March 3rd, 2016, in Tokyo, Japan. A presentation concerning the role of Big Data in Healthcare was given proposing the creation of a dedicated ‘Health Data’ Interest Group. The underlying motivation stems from the fact itself that there are no RDA groups working on the complexities of health data, and that issues such as privacy, security and ethical issues are indeed specific to health data. The outcomes of the presentation showed that there is a strong need to strike the right balance between the rights of people and the rights of data. It is therefore paramount to disseminate and discuss openly and publicly these issues and inform patients about the need of data sharing along with its benefits and its practices. Within the growing field of personalised medicine, which aims to perform patient-specific simulations and predictions, such topics are infact pivotal, and philosophical and moral issues such as “What is the right use of the data? What is their misuse?” must be undertaken.
During the Working Group presentation three core values were identidied and addressed: i) The need for open access to data for research purposes (where long term availability is a crucial issue; ii) The need to develop a vibrant Data Value industry in health and iii) the need to strike the appropriate balance between individual privacy concerns in the healthcare setting and for research purposes and innovation, which can overall greatly benefit the patient population.
The IG will be aiming at triggering strong initiatives under various aspects of research: Data access and protection, personalized medicine, data literacy in healthcare, patient data repositories, in silico drug development, clinical trials and policy making. The latter should infact represent the interests of the data-based healthcare community to policy makers in order to identify the challenges and potential roadmaps within a common framework, identifying and discussing related challenges, interdisciplinary research needs and potential roadmaps.

Futuristic expectations about reaching a “singularity threshold” precisely in healthcare may still have a long way to go, yet ‘Health Data’ certainly represents a major concern in the current Data Regulation debate. Health Data Analytics infact underpin the revolution in health maintenance and disease treatment that modern IT promises to deliver. Data analytics applications are thus needed to convert these data to biomedical knowledge, knowledge discovery and data mining (KDD), which can deliver a number of things, such as massive volumes of uncertain, streaming heterogeneous biomedical data to curate, validate and analyze them from multiple points of view and under different assumptions, as well as to include or exclude dimensions, combine different modalities and incorporate existing knowledge and previous beliefs while preserving the privacy of the patients whose data is being analyzed.

The value of biomedical big data repositories coupled with analytics is yet to be exploited: MD-Paedigree and it’s cognate Project, Cardioproof, aim to foster these topics, standing at the forefront of their implementation.

MD-PAEDIGREE’s 1st Exploitation Seminar and Training Workshop

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its 2nd Biannual Meeting in Utrecht, where both the First Exploitation Seminar and the First Training Workshop were held. The meeting has been hosted by UMCU (thanks to Prof. Berent Prakken!), in the beautiful venue of the UMCU Faculty Club. The Welcome Address was kindly given by Professor Edward Nieuwenhuis, Director of the Children’s Hospital and Chair of the Child Health program.

MD-Paedigree attended with a booth at the First Clinical Movement Analysis World Conference

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MD-Paedigree hosted a booth at the First Clinical Movement Analysis World Conference, held in Rome on October 1st-4th 2014, at the Angelicum Pontifical University of St. Thomas Aquinas. The partners of the NND (Neurological and Neuro-muscolar disorder) area, and of the Infostructure, organised a demonstration of the use of the MD-Paedigree platform applied to NND data-sets. The team at the MD-Paedigree Booth also distributed some copies of the Consensus Clinical Gait Analysis Protocol, asking for the support of Gait Labs across Europe to validate it. Jaap Harlaar, Marjolein van der Krogt, Marije Goudriaan, Kaat Desloovere, Gessica Vasco, Maurizio Petrarca and Enrico Castelli presented the whole project and the clinical gait analysis protocol, which is available for free at: http://www.md-paedigree.eu/clinical-scenario-nnd/gait-analysis-protocol.

Alberto Martini is the New Scientific Director of IGG

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On the 11th of January 2016, the Board of Directors of the Istituto Giannina Gaslini in Genoa, named Prof. Alberto Martini, a worldwide authority on child rheumathic diseases, the new Scientific Director of the paediatric hospital. Professor Martini is renown for his scientific and managerial competence and is held great esteem by the international scientific community. The MD-Paedigree Consortium wishes Prof. Martini all the best in this new endeavour, welcome and congratulations!

 

 

 

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MD -Paedigree appeared on the DIGITAL AGENDA FO EUROPE WEBSITE 

EU awards 12 million euros to supercompute a healthier future for Europe’s children

 
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