You've Received a Diagnosis of DIPG. What Next?

Keith Desserich: Co-founder of The Cure Starts Now, Steering Council of DIPG Registry, Connect Consortium, PBTC and a parent of a DIPG patient

When you or your child is diagnosed with DIPG, there are a few steps that can provide direction and help with treatment options. Often they can provide clarity both to the patient and also to the researcher charged with your child’s care. Although based on personal experience and data accumulated by both the DIPG Registry and The Cure Starts Now Foundation, your doctor should always serve as your guide in this process and the steps below should be discussed with him or her in advance.

1. Contact and Enroll in the DIPG Registry

By doing so you are allowing your child’s records, MRIs and file to be shared with the largest database on DIPG. Not only will this help in advancing future DIPG treatments, but it will allow your doctor to tap into the largest library of trials and data on DIPG in an effort to help your child.

2. See if your hospital is a member of the DIPG Registry

Not only is this an indication of expertise in DIPG, but it will link you to the leading institutions with DIPG protocols.

It is important to receive care at a hospital that regularly treats DIPG patients. DIPG acts very differently than other tumors and that expertise can greatly improve the quality of life and care for your child.

3. Ask for a Second Opinion

This can be done either directly from the DIPG Registry or through a peer hospital. This is important because each DIPG can appear different on initial scans. It is especially important if:

  1. The DIPG looks atypical on an MRI
  2. If the patient is less than 3 years old or a young adult or adolescent
  3. If you are unsure about your hospital's expertise in DIPG

4. Always Thoroughly Discuss Radiation and Timing

Often many drugs can be taken with radiation. Even if protocols may have issues with radiation, you may find that the drugs can be taken off trial. Radiation is the only currently effective treatment for DIPG, so ask questions if it is suggested that you delay radiation treatment.

5. Get Educated on Trials

Most likely your child may enroll in several protocols for treatment. Visit www.dipgregistry.org, download the DIPG Warrior App (on Android and iPhone) or visit www.virtualtrials.org to learn about options. Ask for background data on trials such as adult data, prior pediatric trials, etc.

6. If a biopsy is recommended, ask that it is sent to a genetic panel as well as the DIPG Registry

Sometimes not only can you develop a better understanding of the tumor from a comparative with other DIPG tumors, but you may find certain traits that will open up new options for treatments.

7. Talk With Other Parents You Can Trust

Don’t discount those parents that may have even lost a child. You’ll find that groups such as the DIPG Collaborative have parents that are willing to help, connect you to experts and are dedicated to creating new treatments for all children. They are often the driving forces in the DIPG community.

Contact us to be connected to a parent who is willing to provide one-on-one support.