The registry is a central resource of clinical information about DIPG patients from across the world as well as their imaging (scans), and any available tumor samples. The registry is run by an international network of experts studying and treating DIPG. The data collected form a research continuum from basic biology to clinical practice to address our primary goals of:

  1. Better understanding the biology of DIPG
  2. Developing more effective therapies
  3. Developing new approaches to diagnosis, response assessment and multidisciplinary treatment and follow-up to improve patient outcomes

Specifically, the work of the registry includes:

  1. Recruiting patients diagnosed with DIPG to enroll in the International DIPG Registry
  2. Collecting and maintaining a repository of clinical, demographic, radiologic, and pathologic data for patients with DIPG enrolled on the registry, with annual follow-up of all cases
  3. Developing a bioinformatics repository of new and existing molecular data on DIPG that can be linked to de-identified clinical information in the registry
  4. Establishing and supporting collaborations among investigators for hypothesis-driven research studies using registry data that will ultimately lead to better classification of these tumors and more effective treatments

The long-term goal of the registry is to establish and maintain a highly collaborative, international, hypothesis-driven research infrastructure that can support a wide spectrum of interdisciplinary and translational projects related to DIPG.