Researchers in the United States are turning to big data analytics to gain a much better understanding of paediatric brain cancer and other diseases with a similar genetic process.
US-based charity organisation Dragon Master Foundation has partnered with five specialist hospitals to build awareness around this disease to gather more biological specimens and other data necessary for ongoing research.
Genomic data associated with cancer is growing rapidly, but for rare childhood brain tumours, there has been a lack of advocacy around the need to use genetic and demographic information to develop new treatments and a potential cure.
Dragon Master founder Amanda Haddock told CIO Australia last April that she wanted to change this. The organisation has been holding community events around the US to raise awareness and create a database containing at least 50,000 human genomes -- our genetic material -- where researchers can add and share molecular, genetic, clinical, and environmental data related to the disease, which can be accessed in the cloud.
Haddock and her husband Richard Haddock -- a former software developer -- created the foundation in 2013 after their son lost his battle with the highly aggressive brain cancer called glioblastoma multiforme.
Since then, five hospitals specialising and conducting research in paediatric cancers have come on board with the organisation. They include The Children's Hospital of Philadelphia (CHOP), Ann & Robert H. Lurie Children's Hospital of Chicago, the Children's Hospital of Pittsburgh, the Seattle Children's Hospital, and Meyer Children's Hospital in Florence, Italy. Another hospital will be added this year.
Speaking to CIO Australia, Adam Resnick, PhD and assistant professor of neurosurgery at The Children's Hospital of Philadelphia, said the most widely used practice for sharing data is to literally ship a hard drive to another location for researchers to compare results.
"That ends up being a slow and non-efficient process because you need to identify who to send the data to and collaborate with. This created a need to build a space for collecting, interrogating and studying the data."
There are 1,100 paediatric brain tumour tissue specimens from four institutions available to the research community. Hospitals also collect normal blood-derived genomes that are not affected by cancer for comparison. This includes blood from a child's parents to discover any genetic connections.
"This is important because each one of us is very different from the other. It's very challenging to figure out what is different between people that causes the cancer, and what is different between people just because of normal variations.
"That's unique to the repository infrastructure that we have created because for a long time, people were just saving tumours -- not recognising how important it was to also collect blood specimens," he said.
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