A review of www.clinicaltrials.gov was done on October 20, 2011 to identify which therapeutic trials are currently listed as open for the newly diagnosed child with DIPG. The following is information on the ten (10) listed trials that were listed as accruing patients as well as one vaccine trial that is yet to open. Clinicaltrials.gov seems to be often not be up to date on trial status. If you have interest or questions it might be wise to contact the primary investigator. Contact information is listed at the bottom of each clinical trial site. Most US clinical trials for DIPG can be found with the key word “pontine glioma” but some are still listed under “brainstem glioma”.
*Note- many, if not most clinical trials will not allow you to enter a trial if you have already started treatment.
This information was taken from https://dipgregistry.org/clinical-trials/
The good news is that parents can search for clinical trials themselves. From the synopsis of the trial, parents can review the inclusion/exclusion criteria, find where the trial is being offered and contact information of the investigators. For completed studies, publications citations are included.
The bad news is that there is no one place to easily search for clinical trials. Each site has its own advantages and disadvantages. Here are some of the most useful sites…
Clincaltrials.gov is service of the NIH which registers federally and privately supported clinical trials in the US and around the world. There are over 56,000 trial listings including 155 countries. One of the greatest advantages is that the site is the ability to search by keywords. Examples of keywords include pontine glioma, brainstem glioma, intrinsic glioma and recurrent solid tumor. For more detailed help on basic and advanced searches – Help for Searching ClinicalTrials.gov
The National Cancer Institute has a listing of over 6,000 clinical trials. One of the features allows one to search specifically for trials under brain tumor, child, brainstem glioma. One can also search location through a zip code.
The primary objective of the Pediatric Brain Tumor Consortium is to rapidly conduct phase 1 and 2 clinical evaluations of new therapeutic drugs, intrathecal agents, delivery technologies, biological therapies, and radiation treatment strategies in children through 21 years of age with primary CNS tumors. The PBTC includes nine leading academic institutions with extensive experience in the design and management of childhood cancer clinical trials for children with brain tumors. Another objective of the PBTC is to develop and coordinate innovative neuroimaging techniques on a consortium-wide basis. Open and closed protocols are listed on this table. PI (primary investigator) contact information and a parent summary are available for enrolling studies.
VirtualTrials.com is a private brain tumor site run through The Musella Foundation. Chose the top button to find a drop down menu to ‘Find a Treatment’. Two other very helpful pages on this site are:
Brain Tumor Center (centers that do more than 50 brain tumors a year and some will provide free reviews of MRIs)
Often individual hospital will have listing of clinical trials that are going on at their institution. You can search specific hospitals for this information as well.
The Clinical Trial Process by Larry Kun MD for the Pediatric Brain Tumor Foundation of the US defines and examines the clinical trials process, providing parents with a basic understanding of the steps involved in participating in a clinical trial.
Educational Materials About Clinical Trials
This site contains multiple informational articles on various aspects of clinical trials.
This information was taken from http://www.justonemoreday.org/TreatingPontineGliomas/ClinicalTrials.html