To date, 558 patients have been enrolled; with more than 400 additional patients committed from 41 participating institutions in the United States, Canada, and Australia. All data are fully abstracted. The radiology repository contains over 3000 studies on 445 patients. Each diagnostic MRI is being centrally reviewed by two neuroradiologists. The biospecimen repository contains tissue on 56 patients. However, approximately 30% of patients have had either biopsies or autopsies performed, and we hope to expand the tissue acquisition efforts. To date, 14 autopsies have been performed for tumor donation to the DIPG Registry and several have been coordinated for families at sites across the country. Tumor specimens from 6 patients have been collected for in vivo and in vitro model development. Molecular data is now available on 38 patients.
The DIPG Registry now has 6 studies that have been approved by the Scientific Advisory Committee and are in various stages of conduct and analysis.
- Clinical, radiological, and histo-genetic characteristics of long-term survivors of diffuse intrinsic pontine glioma: a collaborative report from the International and SIOP-E DIPG Registries. Will include approx. 1,000 patients from North America, Australia, Germany, Austria, Switzerland, the Netherlands, Italy, United Kingdom, Croatia and France. Will describe the clinical, radiographic, pathological and biologic characteristics of long-term survivors with DIPG and correlate key variables with outcome. Abstract to be presented at ISPNO in June, with publication soon thereafter.
- A novel tool to predict the survival of Diffuse Intrinsic Pontine Glioma patients: External validation of the European prediction model using the International DIPG Registry. A prognostic tool to discriminate between patients with very short, average, and increased survival based on three clinical and one radiological variable. Publication is in progress.
- DIPG: Contemporary Survival Endpoints. A study examining reported survival endpoints in order to better define progression and aid the development of objective measures for robust clinical trials.
- An epidemiological study to determine incidence patterns of DIPG in North America 2000-2010. Our Canadian collaborators have presented the Canadian epidemiology and we hope to be able to validate their data.
- Establishment of in vitro and in vivo Fresh tissues from autopsy are being shared to establish models for drug screening.
- Comprehensive Molecular-Based Cross-Species Comparison of DIPG Biology. Will examine overlapping genetic alterations between mouse and human DIPG, allowing for identification of novel subtype-specific oncogenic pathways.
In the next 3 years, Registry investigators will promote robust collaborative research projects on all aspects of DIPG, and will continue to make Registry data available to external investigators after scientific committee approval. We plan to grow the Registry greater than 1,000 patients and continue to expand internationally. New Zealand is now joining and we are in discussion with other countries in the Middle East, China, India, Central and South America. Another important area of focus is the development of supplemental educational materials for families and medical teams. This information will be displayed on www.dipgregistry.org. Since April 2012, 218,000 people have visited the website from 183 countries. Additionally, 235 consultations have been provided to patients and families around the world.
To learn more about the International DIPG Registry, please:
- Visit www.dipgregistry.org
- Contact the Registry office at 1-877-349-8074 or email@example.com