The purpose of the registry is to support research related to DIPG. Data and samples from the registry are available both to researchers affiliated with the registry and to external researchers.

Research proposals from internal and external investigators will be evaluated by an advisory committee for scientific merit and appropriate use of resources before approval.

To request access to registry data or samples for a research project, please contact:

International DIPG Registry Office

Hours: Monday-Friday, 8:30am - 4:30pm EST

Telephone: 1-877-349-8074

Email: referrals@dipgregistry.org

 

NEWS & RESEARCH


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We have had multiple questions about DIPG clusters in several geographic areas of the United States. We wanted to provide an official statement from the DIPG Registry that has been recently approved by our Steering Committee:

“The International DIPG Registry currently includes 48 participating sites in the US. Since we are not capturing data from all patients diagnosed with DIPG across the US, at this time we cannot accurately address the issue of the possible existence of geographic clusters. The map below shows the sites that are currently submitting data to the Registry. As this map demonstrates, not all geographic locations are equally well represented on the International DIPG Registry. We are working hard to include as many sites as possible in the US in 2018, and we hope to be in a better position to address this important question in the next year.”

#FightDIPG #DIPGregistry
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We were so honored to present the progress of the International DIPG Registry to an amazing group of foundations with the DIPG Collaborative. We love meeting our foundations and families! You all give us a renewed sense of energy as we do what we can to further research and #FightDIPG Thank you!!! ... See MoreSee Less

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