Pediatric DIPG / Brainstem Glioma Tissue Donations
Compared to adult brain tumors, very little is really known about these tumors. We (the Musella Foundation) have funded a lot of pediatric brain tumor research, but what is needed now is a more complete understanding about the biology of these tumors - so we can find better treatments. The best way to learn the biology of these tumors is through testing tissue samples. There is a clinical trial going on now that collects and analyzes samples from patients with diffuse intrinsic pontine glioma or brainstem glioma. They only take a portion of what is collected from your child during the normal course of your child's treatment. They do not subject the child to any additional tests. With your prior permission, whenever your child has a blood test, urine analysis, cerebral spinal fluid (CSF) draw or biopsy, a portion of it is sent to the research center for analysis. Every parent of a child with a DIPG or brainstem glioma should participate. There is no cost, no harm to the child and it will speed up the search for the cure!
- Brochure about the DIPG / Brainstem Glioma Tissue Sample Trial
- clinicaltrials.gov website.
Donation of autopsy tissue
These tumors are horrendous. We know that the absolute worst thing in this world is the loss of a child. If the worst happens and the tumor takes the childs' life, the family is justifiably devastated. It isn't fair to the parents to ask at that time if they would consider donating autopsy tissue to research so that it may help others who are battling this disease. So many times, the parents aren't even told of the option, robbing them of the chance to help other families going through the same thing.
Hopefully it won't be needed for a long time, but the time to consider it is now. It is ok to consider it and say no, but if you think it might be something you are interested in, here are the resources you need. Note that making such a wonderful gift should not cost you anything:
- Brochure about the DIPG / Brainstem Glioma Tissue Sample Trial and Postmortum Donations
- Tissue Donation Website