With collaborations with 62 academic medical centers, from 11 countries and the generous support of the DIPG Collaborative, the International DIPG Registry (IDIPGR) continues to grow and expand. From April 2012 to April 2017, 709 DIPG patients have been enrolled. We are now focusing on ensuring that all newly-diagnosed patients are given information about the Registry to maximize enrollment.
In recent months, IDIPGR staff members have been working to collaborate with 15 new international sites. These include sites in Brazil, Argentina, Chile, Egypt, China and India.
We have also developed a genomics repository that will allow linkage of clinical and genomic data under the leadership of Dr. Peter White.This repository will host genomic data from DIPG samples identified from all over the world.
Nine projects using data/tissue from the IDIPGR by 13 principle investigators from around the world are currently underway.
The following manuscripts have been published in recent months:
- The International Diffuse Intrinsic Pontine Glioma Registry: an Infrastructure to Accelerate Collaborative Research for an Orphan Disease.
- Development of the SIOPE DIPG Network, Registry and Imaging Repository: A collaborative effort to optimize research into a rare and lethal disease.
Investigators interested in submitting a research proposal to use Registry data and/or tissue, can click here to access the application. For questions regarding the International DIPG Registry and Repository please contact:
- Telephone: 1-877-349-8074
- Email: firstname.lastname@example.org