There are 7,000 rare diseases identified so far, often with broad symptoms that vary in severity from patient to patient. A health data consortium was developed with the Australian Genomics Health Alliance, Genomics4RD, Genomics England and Intermountain Healthcare, as well as 85 stakeholders from academia, government and industry, with the aim of sharing genomic data for rare diseases across borders. Participating in a sensitive health data consortium is the only way to maximise the volumes of data already collected, sitting in silos around the globe. “Australia’s National Strategic Action Plan for Rare Diseases calls for improvements to rare disease data collection and use, including best-practice safe storage and data sharing. The first case study will focus on enabling cross-border access to rare disease genomic data between four countries.

Source: The Star August 21, 2020 04:52 UTC