Proof of Concept for Sharing Rare Disease Data Across Borders Is Crucial Step for Diagnoses

-The discovery of diagnoses and treatments that could save or improve lives have historically been blocked by data security, patient privacy and data interoperability issues

-Genomic institutions in Australia, Canada, the UK and the US and the World Economic Forum found a way to share rare disease data safely and anonymously across borders

-Australia and Canada will pilot the proof of concept, potentially helping the 8% of their populations living with a rare disease.

-Project findings outline how to accelerate time to diagnosis and treatment for patients with rare diseases, potentially extending or improving the quality of life

–Read the report

 
San Francisco, USA,  Those who contracted COVID-19 are experiencing what it’s like to have a condition that is difficult to diagnose without clear treatment options. This is the norm for people living with a rare disease. There are 7,000 rare diseases identified so far, often with broad symptoms, varying in severity from patient to patient. This causes not only a lengthy and difficult diagnosis process, but also a lack of available data for treatment given only a handful of people living in the same country are suffering from the same disease. In fact, treatments may be underway in one country unknown to the patients in another.

Over the last two years, the World Economic Forum’s precision medicine team led a pilot project called Breaking Barriers to Health Data, designed to ensure that people living with rare and other complex diseases were not missing out on life-saving diagnoses and treatments.

The 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.

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Πηγή: weforum.org