Technology Facilitates International Collaboration of Neuroblastoma Research

Spotlight on St. Baldrick’s funded International Neuroblastoma Risk Group (INRG) Database, co-chaired by Dr. Susan L. Cohn, University of Chicago.

International collaboration is crucial to meaningful progress and advances in childhood cancer research. Right now, all over the world, research is being done by the best and brightest investigators, but sharing information across continents or even between institutions is not an easy task. Imagine if the findings from researchers in Japan were made available to researchers in Australia and perhaps even combined with research being done in the U.S.? What could this mean for kids with cancer?

In 2004, a group of 52 neuroblastoma experts and pediatric oncologists, the International Neuroblastoma Risk Group (INRG) task force, came together to find a way to share neuroblastoma clinical trial data in order to create an international risk classification system. They compiled data from over 11,000 patients in Europe, Japan, North America and Australia into one large Excel sheet – “Never before had this quantity of data been collected on children with neuroblastoma,” said Dr. Susan Cohn, co-chair of the INRG task force.

One of the problems neuroblastoma investigators face is the rare nature of this cancer along with its complex and diverse biology. Some patients have clinically aggressive high-risk disease, while others can be cured with minimal or no therapy. Recently, a small number of tumors have been found to have mutations in specific genes that can be targeted by specific drugs. However, given the small number of cases with these gene mutations, the impact of treatment will be difficult to assess without international collaboration.

It is clear that large data sets will be needed to link neuroblastoma patients with biologically relevant therapeutics. Their proposal? Use modern technology to create a central, online database linking the demographic data collected by the INRG task force with neuroblastoma biobank and genomics (and other “omic”) databases around the world. Brilliant!

“We wanted to take our data that currently sits in an Excel spreadsheet into the 21st century, using state of the art technology. This database will be web-based, and accessible to investigators from around the world for data mining studies,” said Dr. Cohn. “We will integrate data from multiple datasets pertaining to childhood neuroblastoma, introduce tools for facilitating data requests and data sharing, and create interfaces for data visualization and basic statistical analysis.”

Over the next few years, the INRG task force discovered a new challenge – they needed to acquire funding for the vital technology. This was a difficult roadblock because many grant-making institutions and organizations are not interested in funding projects to build infrastructures. The St. Baldrick’s Foundation recognizes the importance of funding infrastructure grants, which helps remove the wall that often stands in the way of this type of project, as was the case of the INRG.

In July of 2011, the INRG task force was granted a Consortium Research Grant by the St. Baldrick’s Foundation to fund the implementation of the technology needed to take the international neuroblastoma database to the next level – the web.

As a result of St. Baldrick’s Funding, the INRG can move forward in accomplishing the following:

1. Create a user-friendly, searchable and public web database to be used by investigators around the world.
2. Update the neuroblastoma patient data that was originally collected in 2004: How are the patients doing now? Have they developed secondary cancers, or any other long-term effects?
3. Collect new patient data. Larger neuroblastoma clinical trials have taken place since 2004 – crucial and current data that are necessary puzzle pieces in this research.
4. Link this database to biobank and genomic databases around the world. But those four goals are only the beginning.

Not only will the technology developed by the INRG directly impact neuroblastoma research, it will also lay the future groundwork for other childhood cancer databases – groundwork that will make a huge impact in the lives of children with cancer.