Finding cures for children's genetic diseases

News

New data sharing opportunity for ProCan

12/Feb/2019  

The director of a major new data resource centre that aims to change the way researchers work, has shared his vision with scientists at Children’s Medical Research Institute this week.

Dr Adam Resnick is Director of Data Driven Discovery in Biomedicine at the Children’s Hospital of Philadelphia in the US. He visited CMRI on Monday to talk about the Kids First Data Resource Center, and to discuss how CMRI's ProCan can collaborate with this initiative.

When Dr Resnick arrived at the Hospital in 2007 he set about changing the way data was stored, shared and used - with an emphasis on collaboration.



“We wanted to move raw data into information, into knowledge that can be interpreted and applied in the clinical domain,’’ Dr Resnick said.

The aim was to create a new collaborative paediatric research effort with the desire to “tackle the complexity of disease through integration of information’’ and to “encourage data sharing within the paediatric research community’’.

The idea was to create partnerships between hospitals and research institutes internationally so that everyone shared data for the common good.
 
“We can’t think of big data as a version of what we used to do,’’ Dr Resnick said. “We need new ways of doing things. Patients are holding the stakes.’’


It began with the hospital sharing its data to set the precedent and now has 18 institutions across the world with information from 30,000 patients enrolled across 50 projects. The first release focused on brain cancer.

Dr Resnick explained that if data were shared more widely, then lots of researchers would have the opportunity to compete to find cures for cancer using that data - which would lead to faster and better outcomes for patients.

“What we have found is, it turns out it’s okay to compete and see who can find the cure for cancer,’’ Dr Resnick said. “It is a unique and powerful tool to empower discovery. The community is so hungry for change, we have this unique opportunity to redefine and evolve.’’

It aims to become the largest collection of integrated genomic and clinical data for childhood diseases, which in the past were studied in isolation. It can also be accessed by patients and families.