What to Expect

1) The DIPG DMG National Tumor Board is offered as a free service to providers and patients across the United States. The patient, parent, or provider may complete the short form on this website to be screened for eligible participation in the DIPG DMG National Tumor Board. Alternatively, a provider may email the tumor board directly ([email protected]) to submit a case for review. 

2) The contact information submitted on the form will be sent to the tumor board coordinator. Within three working days, the coordinator will contact you through email to confirm: 1) the patient is being treated in the United States, 2) is within 12 weeks of initial diagnosis, and 3) diagnosed within 4 weeks of first progression. The coordinator will also provide a list of required medical information. On a rare occasion, the tumor board will hear the case of a patient who falls outside this scope. Please present any circumstances you believe which would lend itself to an exception.

3) The provider will be asked to provide your medical records, including all MRI scans, biopsy sequencing results, pathology results, and clinical notes to the tumor board coordinator. The tumor board coordinator will also help obtain the required records and imaging for review. As a patient contact, you will be asked to provide a list of your providers and the provider you wish to be the primary contact for the tumor board. This will typically be your oncologist, but may be your nurse practitioner, pediatrician, family doctor, or in rare occasions, a nurse navigator.

4) If for any reason you do not have a provider to work with you, the www.mydipgnavigator.org nurse navigators can help you select a provider in your area.

5) Once all patient records are received, the coordinator will send your provider a date/time for the tumor board meeting. At this time, tumor board is typically held bi-weekly on Thursdays. The patient’s provider will be asked to participate in the tumor board meeting. The provider may provide additional patient information/observations, clarifying information, and will be able to ask the tumor board questions. Additional providers around the world may also watch the tumor board meeting by Zoom under HIPPA protocol.

6) The tumor board will issue a written report with treatment recommendations to your provider. The patient may request an email copy of the written report. The provider should then meet with the patient to discuss the tumor board written report, any dissenting views, and next steps for consideration of trials and treatment options.

7) The coordinator for Children’s Brain Tumor Network representative will provide an opportunity for the patient family to consent and share patient information during the patient journey.

8) When applying for entry into a clinical trial, we recommend your communication state that the patient’s case has been evaluated by the DIPG DMG National Brain Tumor Board and considered potentially eligible for the clinical trial or expanded protocol.

To be evaluated for the DIPG DMG National Brain Tumor Board, please complete the following information. Our coordinator will contact the patient provider within three business days of submittal.