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This funding was part of a larger collaborative funding initiative with other members of the Neuroblastoma Consortium.
The Neuroblastoma Consortium consists of 22 global funding organizations such as ours who are dedicated to neuroblastoma. In addition to the United States, the United Kingdom, Australia, Germany, The Netherlands, Spain, Switzerland, and Canada are also represented. We all came together for one purpose: to fund global initiatives that will make a difference to all the children and research around the world. Power in numbers, so to speak.
We gathered 7 medical experts in the field of neuroblastoma and formed the consortium’s scientific advisory board with the task of not only identifying but also prioritizing critical projects that could benefit from collaborative funding and accelerate the global research process.
In 2015, this advisory board recommended the INRG database as one such project. This database is a long term initiative that allows local studies to use large numbers of data. These data are available to investigators from around the world and significant discoveries have already been made using this unique resource. The patient data included in this database continues to expand, so the database is representative of where children are.
Based on a child’s characteristics at diagnosis, for example, doctors are able to use this database to determine if the child’s disease falls into low, intermediate, or high risk, which in turn determines the appropriate level of treatment intensity. As one can imagine, the treatment intensity is different for each risk group.
The architecture housing the database has been transformed to a new web-based system with technology that enables linkage with other databases. The long-term goal is to develop an interactive database that will facilitate international, multi-institutional, interdisciplinary research in childhood neuroblastoma and ultimately lead to the development of more effective treatment strategies for children with this disease.
The Consortium raised $62,000 in matchable funds and, along with other donations, a total of $212,000 was directed to the INRG database for further enhancements as part of this collaborative funding initiative. Quite an accomplishment!
Funds will support Susan Cohn Neuroblastoma Research –
INRG (International Neuroblastoma Risk Group) database.
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