Frequently Asked Questions
Why?
Many researchers have stated that there may be no true movement towards a cure for diffuse intrinsic pontine gliomas until there is a better understanding of this tumor’s biology. Currently, DIPG tumor tissue is scarce. Biopsies of typical DIPGs are rarely performed. Other tumors are able to gain tumor tissue for analysis at the time of surgical resection. Thus, the only way to gain tumor tissue for molecular analysis is via autopsy donation.
Is there currently research underway on DIPG autopsy tissue?
Yes.
Who is doing this research?
There are a few institutions that have tumor tissue analysis research underway currently. We have several links to different researchers from the main tumor tissue analysis page.
http://www.justonemoreday.org/Research/TumorTissue%20Analysis/CurrentResearch.html
Should these researchers be contacted?
Yes.
The researchers’ contact information is located on the individual pages from the link above. There are both frozen section and paraffin embedded block studies. These researchers will be able to explain what is needed in preparation and can also help explain the mechanisms so that the process goes as smoothly as possible.
Who should contact these researchers?
The child’s doctor needs to contact these researchers to deal with the technical aspects of the donation (consents, sample collection, transportation, etc.). Many of these researchers have been extremely giving of their time and are willing to answer parent’s questions.
When should I start making arrangements?
This is such a difficult topic to think about; however, it tends to be smoother if the necessary arrangements are made in advance. This may allow families to more fully discuss the issue including potential disagreements.
Can one still choose the option of donation even if the child dies at home?
Yes. Many children who succumb to diffuse intrinsic pontine gliomas will die at home. There are more issues that have to be worked out. Funeral homes do not perform autopsies. Thus, arrangements will have to be made on where the autopsy will occur. In addition, transportation issues will need to be resolved.
What if I didn't make arrangements and my child dies, can I still do this?
It is still possible and has been done. However, trying to make arrangements quickly can be difficult.
Can I change my mind if I previously said I wanted autopsy donation and now don’t?
Yes. An autopsy will not be preformed until you give consent.
What are the arrangements that need to be made?
If a child dies at home, transportation will have to be arranged to a facility that will remove the tissue in a timely manner. Since funeral homes do not do organ procurement, this will have to be arranged with another institution such as a hospital. Because many children are treated at regional pediatric centers which might not be close to home, arrangements might need to be made with a local hospital.
How quickly does this need to be done?
The short answer is that in general the sooner the better quality of donation is likely.
The longer answer is that it depends on the study. Different parts of the tumor are more or less fragile. For example, DNA is less fragile than RNA. With the fresh frozen samples, less then six hours is desired. However, tumor donation of 12 or even 24 hours is possible. Questions on this should be addressed with your doctor and the researchers.
If we donate can we have an open casket?
Yes.
If we donate, will the tissue automatically go to the research?
Not necessarily.
Some institutions keep the tissue- even if they are not currently doing research- unless specified by the family. It is best to ask. If there is specific research that you are interested in then you might have to make this clear to the physician.
Last Update May 8, 2009