International DIPG Registry Update (September 2015)

Update on Current Status, (September 2015)

The International DIPG Registry is now the largest and most comprehensive collection of data from a diverse cohort of DIPG patients available to researchers in the world.   With the generous support of a coalition of pediatric brain tumor foundations from the DIPG Collaborative, and collaborations with greater than 38 academic medical centers internationally, the registry is growing exponentially. To date, 479 patients have been enrolled; with greater than 500 additional patients committed from participating institutions.  The radiology repository contains over 2084 studies, on 341 patients. The pathology repository contains tissue on 24 patients. 13 autopsies have been performed for tumor donation to the DIPG Registry.

In an effort to rapidly increase enrollment in a short amount of time, DIPG Registry staff have begun traveling to sites including; Seattle Children’s, Children’s National, Children’s Hospital of Philadelphia and the National Institutes of Health to retrieve patient records, neuroimaging and tumor samples directly. The DIPG Registry has presented its work at the International Society for Pediatric Neuro-Oncology (ISPNO, 2014) conference in Singapore and at the AACR/Pediatric Society of Neuro-Oncology (SNO, 2015) conference in San Diego, as well as at DIPG Symposium in Chicago.

In spring of 2015 the DIPG Registry launched two initial research projects using Registry data.  Registry collaborators have begun studying long-term survivors of DIPG, examining their clinical, radiographic, pathological, and biologic characteristics. A second project is using Registry tissue to establish brain tumor models in mice. Now in total the International DIPG Registry has 6 studies that have been approved by the Scientific Advisory Committee and are in various stages of conduct and analysis. More details on these studies coming in future updates.

Ultimately, Registry investigators hope to promote robust collaborative research projects on all aspects of DIPG, and will make Registry data available to external investigators after review of the proposed research by scientific committee. Cincinnati Children’s is the operations and database center of the Registry.  The Hospital for Sick Children in Toronto, Ontario, and Sydney Children’s Hospital, host tissue repositories for tumor samples from Canadian and Australian participants. A parallel registry in Europe is in the final developmental stages. The Registry website,, continues to serve as a resource to families all across the world, with the ability to provide international consultations, answer questions and provide basic education about DIPG.

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