Building a Post-Mortem DIPG Tissue Research Progam

Perhaps the biggest rate limiting step in DIPG research has been the lack of tissue.   Without tissue, what is there really to study in the basic science realm?   However,  DIPGs pose significant hurdles in getting tissue as biopsies have not been traditionally preformed and post-mortem donations have infrequently been requested.

Over the years there have been many barriers to post-mortem donations.  Some lacked knowledge- the medical system just didn't know that any research was actively being done.   Some didn't believe that usable samples could be obtained for research.   Some didn't know how to logistically make this happen especially if the child died at home and the research was being done somewhere else in the country.  Some didn't know how or when to approach the parents on this delicate topic.

There have been a few places that have worked to collect post-mortem DIPG samples for research.   One of the most impressive total package programs is Children's National Medical Center.   These researchers have taken on each obstacle and overcome them.

For me the first hurdle is if there is any DIPG research being done at that institution.   It doesn't do us any good to have a sample donated and then it sits in the freezer.   At Children's National Medical Center there was an interested researcher, Javad Nazarian, who already had a funded grant from the Childhood Brain Tumor Foundation to study DIPGs.    This meant there was some money and someone to do the research but there are still huge problems- how does anyone know you need the samples and how do you obtain them.

A researcher-clinician partnership was lead to a multi-disciplinary team.   This team included a pediatric neurosurgeon (Suresh Magee) and two pediatric neuro-oncologists (Roger Packer and Brain Rood) as well as Javad Nazarian.

To address the awareness issue, three things were done.  First, the researchers developed an IRB protocol and took the innovative step to have it placed in clinicaltrials.gov.  In this way,  interested physicians and parents might more easily find out about the research and have the contact information. Secondly, they developed a brochure detailing the information which parents could take away and review at a later time.  By the way,  it also had a 24 hour contact pager to help facilitate logistics.  Thirdly, they included their information on the Kid V Cancer site on research needing tissue.

The logistical problems of having a child die at home and then donating a post-mortem sample are complex; but, they are overcomeable.   It is easier to overcome them with some advanced planning.  Transportation is one of the recurrent hurdles as often times if the child will have to be transported to the hospital first then this is not covered by insurance.   There have been foundations that have stepped up to fund these expenses so that this research will not be stopped.  In this case, the Musella Foundation has supported that aspect of the program.

And now to maximize research,  Children's National Medical Center is part of a DIPG tissue sharing consortium called the Mid-Atlantic DIPG Consortium (MADC).  The other two institutions are Johns Hopkins and the National Institute of Health- Pediatric Oncology Branch.  This collaboration must be highly successful as several DIPG abstracts have come out for a series of spring meetings including AACR, USCAP and the SNO/PBTF Pediatric Neuro-Oncology Basic and Translational Research Conference.

If asked, some families will donate their child's tumor.   It will not be all, but many will and it is made so much more possible with a program in place to address the issues.  Kid's V Cancer is a good place to find out more about autopsy donation- both for families (FAQs and others experiences) as well as physicians  (how to ask and autopsy donation checklist).

Thank you Children's National Medical Center for putting this program in place to advance DIPG research.

References:
Molecular Analysis of Samples from Patients with Diffuse Intrinsic Pontine Glioma and Brainstem Glioma
Brochure: http://www.virtualtrials.com/pdf/dipg.pdf

Clinicaltrials.gov http://clinicaltrials.gov/ct2/show/NCT01106794

Selected DIPG articles/abstracts from Javad Nazarian and group:
Protein profiling of formalin fixed paraffin embedded tissue: Identification of potential biomarkers for pediatric brain stem glioma
http://www.ncbi.nlm.nih.gov/pubmed/21136889

Insights into pediatric diffuse intrinsic pontine glioma through proteomic analysis of spinal fluid
http://www.ncbi.nlm.nih.gov/pubmed/22492959

Targeting the Notch and mTor pathways in diffuse intrinsic pontine glioma
http://www.abstractsonline.com/Plan/ViewAbstract.aspx?mID=3086&sKey=6fa486c2-2701-4a76-8431-b22144df78e4&cKey=c3e199ac-82f7-486d-9d65-bb1c13525e3b&mKey=%7b9B2D28E7-24A0-466F-A3C9-07C21F6E9BC9%7d

NG2 Upregulation in Pediatric Diffuse Intrinsic Pontine Glioma and Its Role in Tumorigenecity in Vivo
https://soc-neuro-onc.conference-services.net/reports/template/onetextabstract.xml?xsl=template/onetextabstract.xsl&conferenceID=3467&abstractID=740466