The Development of the INSS and INRG
The first Forbeck Forum, held in 1985, identified an important gap in the neuroblastoma field. Doctors in different clinics, in the United States and internationally, each had their own measures for monitoring neuroblastoma growth and response to treatment. This led to the creation of the International Neuroblastoma Staging System (INSS) – which has also been known as the ‘Forbeck Criteria’. INSS also founded a group of international clinicians and scientists, the International Neuroblastoma Risk Group (INRG), that has continued to expand and – with the Foundation’s support – meets periodically to review and update the INSS.
The database has already produced many research papers but one of the greatest
achievements of the database has been to lower toxicity levels of patient
treatment. By mining the database, physicians are able to better treat patients.
The Development of the Interactive INRG Database (INRGdb)
The INRG, with funding from the Forbeck Foundation and others, developed an interactive website to allow investigators to query the database which now has over 18,000 international patients. Now, for the first time, researchers wanting to study specific aspects of neuroblastoma are able to directly query this rich database and also immediately know which patient’s samples are available. This was established as the Interactive INRG database (INRGdb) in 2011 and is housed at the University of Chicago. The database now interfaces directly with the Children’s Oncology Group Tumor Bank in Columbus, Ohio.