A team of BMI data experts is leading an effort to develop the technology behind the International Diffuse Intrinsic Pontine Glioma (DIPG) Registry.
The registry is a collaborative effort by physicians and researchers from North America, Europe, and Australia to centralize and standardize the collection of clinical data and tumor samples from DIPG patients. The goal of this effort is to support innovative research and ultimately find a cure for DIPG.
DIPG is the most common form of brainstem glioma in children. Approximately 300 children develop DIPG every year in North America and Europe. Currently, outcomes for most patients are poor, with a median survival of less than 1 year from diagnosis. Because DIPGs are rare compared to adult brain tumors, most hospitals see few patients with these tumors, making it difficult for researchers to collect enough information to look for new treatment. The DIPG Registry will collect information and tumor samples from DIPG patients around the world and make it available to researchers studying the disease.
The registry includes 110 academic sites in 15 countries, with a total of 980 patients enrolled.
“A lot of work went into coordinating with the participating sites to settle on a set of common data elements on which everyone agrees,” says Andy Rupert, the lead developer on the project. “The next challenge is to create systematic interfaces between the sources of data: Research picture archiving and communication systems (PACS) for imaging data, VIVA for genomic variant data, and digitized slides from the Division of Pathology and Laboratory Medicine’s electronic system.”
The team plans to pull the various data into the DIPG Registry Query Tool (LINKS) to allow for easy data browsing and retrieving.
Researchers will be able to define a cohort in LINKS and then view the imaging data in the Research PACS or the variant data in VIVA. Any site that contributes to the registry will have access to LINKS and will be able to query across all datasets.
Future work involves growing the existing record count and adding additional data types such as RNA sequencing data. As the user base grows, the query interface will be refined to allow for a wider range of queries.
BMI staff working on the registry include Peter White, Andrew Rupert, Phil Dexheimer, and John Meinken (UC BMI). They are collaborating with Maryam Fouladi, MD, MSc, FRCPC (Oncology), Mariko DeWire-Schottmiller, MD (Oncology), Brooklyn Chaney (Oncology), Katie Black (Oncology), Christine Fuller, MD (Pathology), Blaise Jones, MD, and James L. Leach, MD (Radiology), in order to link the clinical, genomic, and imaging data.
Additional information regarding the DIPG Registry can be found at https://dipgregistry.org.