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About the DIPG/DMG Registry

Our mission is to support innovative research and find a cure for DIPG & DMG.

History

In 2012, investigators, funded by the DIPG Collaborative (a philanthropic partnership among 29 private foundations), launched the International DIPG Registry and Repository to advance understanding of DIPG. Comprised of comprehensive deidentified but linked clinical, imaging, histopathological, and genomic repositories, the IDIPGR uses standardized case report forms for uniform data collection; serial imaging and histopathology are centrally reviewed by IDIPGR neuro-radiologists and neuro-pathologists, respectively. In 2019, the DIPG Registry expanded to include Diffuse Midline Gliomas (DMGs) as well.

Also, in 2012, The SIOPE DIPG Network, a network of physicians and researchers throughout Europe, initiated the SIOPE DIPG Registry to account for European DIPG patients. The SIOPE DIPG Registry is a parallel database to the International DIPG Registry and plans to also expand to include DMGs.

With the generous support of a coalition of pediatric brain tumor foundations from the DIPG Collaborative, and collaborations among multiple academic medical centers around the world, collectively the International DIPG/DMG Registry (www.dipgregistry.org) and SIOPE DIPG/DMG Registry are now the largest and most comprehensive collection of data from a diverse cohort of DIPG and DMG patients that is available to research around the world.

Founding IDIPGR physicians and researchers include:

  • Maryam Fouladi, MD
  • Ute Bartels, MD
  • Eric Bouffet, MD
  • Cynthia Hawkins, MD
  • James Leach, MD
  • Blaise Jones, MD
  • Katherine Warren, MD
  • Timothy Hassall, MD

Who is the Registry?

The International DIPG/DMG Registry and SIOPE DIPG Registry are collaborative efforts to centralize and standardize the collection of clinical data and tumor samples from DIPG and DMG patients. The International DIPG/DMG Registry constitutes physicians, researchers, and participant from North America, Africa, Asia, Australia, and South America. The SIOPE DIPG Registry constitutes physicians, researchers and participant data throughout Europe.

Why a Registry?

Currently, outcomes for most patients with DIPG and DMG) are poor (<1% survive 5 years and 90% die within 2 years of diagnosis). Therefore, new approaches to treating DIPG and DMG are urgently needed.

To find effective treatments for DIPG and DMG, researchers need to better understand how the diseases work. Because DIPGs and DMGs 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/DMG Registry will collect information and tumor samples from DIPG and DMG patients around the world and make it available to researchers studying the disease.

What is the Registry?

The registry is a central resource of clinical information about DIPG and DMG 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 and DMG. 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 and DMG
  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 and DMG to enroll in the DIPG/DMG Registry
  2. Collecting and maintaining a repository of clinical, demographic, radiologic, and pathologic data for patients with DIPG and DMG enrolled on the registry, with annual follow-up of all cases
  3. Developing a bioinformatics repository of new and existing molecular data on DIPG and DMG 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 and DMG.

What does the Registry provide?

For patients, families, and medical professionals

The DIPG/DMG Registry provides:

  • the opportunity to enroll and contribute information to an international database accessible to collaborating researchers around the world
  • access to record reviews from international experts
  • a comprehensive source of information, including the biology of the diseases, symptoms and diagnosis, current treatment approaches, clinical trials and updates on relevant research projects

For more information about how to enroll click here.

For researchers

For researchers, the DIPG/DMG Registry provides a source of comprehensive clinical, radiologic, and pathologic data linked to a bioinformatics repository of molecular data for a substantial cohort of DIPG and DMG patients. Frozen tissue samples may also be available. Research proposals from external investigators will be evaluated by an advisory committee for scientific merit and appropriate use of resources before approval.

For more information about how to submit a research proposal, please contact us.