The International Diffuse Intrinsic Pontine Glioma (DIPG) Registry is a collaborative effort by physicians and researchers from North America, Europe, and Australia to centralize and standardize the collection of clinical and neuro-imaging data and tumor samples from DIPG patients. This 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. Radiation therapy can shrink tumors, temporarily improving some symptoms and delaying the progression of the disease, but in almost all cases, the tumor continues to grow. So far, clinical trials have not shown that currently available chemotherapy drugs, radiosensitizing drugs (drugs that make tumor cells more likely to be killed by radiation therapy), or biologics (medical products created by biological processes, such as vaccines or gene therapy) benefit patients. Because of their location in the brainstem, DIPGs cannot be removed surgically. New approaches to treating DIPG are urgently needed.
To find effective treatments for DIPG, researchers need to better understand how the disease works. 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 treatments. And because most DIPGs are not biopsied, researchers do not have access to large numbers of tumor samples for research. The DIPG Registry will collect information and tumor samples from DIPG patients around the world and make it available to researchers studying the disease.