Children have often had to accept medicines and treatments based on what is known to work in adults. However, according to Dr. Renne Jenkins, President, American Academy of Pediatrics, “Children are NOT little adults. They are unique.” Therefore, as a society, we should NOT agree to a ‘hand-me-down’ approach to treating our brain tumor children. But instead, we should ensure that studies are designed to target children in the research to find them the best treatments and drugs for their specific situations.

Pediatric clinical trials are unique. Pediatric brain tumor clinical trials are even rarer. But we know, that the only way to bring our brain tumor children into ‘first class citizenship’ in medical care is to design focused clinical trials on their behalf. The National Institute of Health’s Organization of Rare Diseases further corroborates this point in their new “No More Hand-Me-Down Research” video.

Historically, there are few clinical trials open to pediatric brain tumor kids, and there have been even fewer dedicated trials to date.  A Kids’ Brain Tumor Cure Foundation is working towards changing this, as children with brain tumors, regardless of the grade, type or location, need clinical trials in order to push potential treatments more rapidly from the research mode to end user.

In a short video, Dr. Kieran shares a concise definition of the way a clinical trial protocol is structured and Dr. Goldman defines the three different Phases that a clinical trial can be registered.

In addition, the NIH’s Organization of Rare Diseases has created the following four videos which answer four of the most commonly asked questions about children’s clinical research:

  1. Why is it important for CHILDREN to participate in clinical trials?
  2. Who’s Who on a Research Team?
  3. How does a clinical trial affect the family?
  4. What are the Rights of Families in Studies?

 

The following is a list of sites that provide clinical trial information on an international level:

The PLGA Foundation is working towards increasing the number of clinical trials available to low grade brain tumor kids. (When you search these sites, consider giving multiple options for search criteria including: glioma, astrocytoma, pediatric brain tumor and pediatric solid tumor, etc.)

Organization Description
National Institutes of Health Catalog of Clinical Trials ClinicalTrials.gov provides regularly updated information about federally and privately supported clinical research in human volunteers. The site gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. The information provided here should be used in conjunction with advice from health care professionals.
Pediatric Brain Tumor Consortium The primary mission of the PBTC is to identify through laboratory and clinical science superior treatment strategies for children with brain cancers
Clinical Trials and Noteworthy Treatments for Brain Tumors A website from the Musella Foundation which supplies information on resources for brain tumor patients and treatments for brain tumors, with a focus on new and/or experimental treatments.
Massachusetts General Hospital Information on low grade glioma clinical trials is organized according to tumor type and/or location.
St. Jude’s Research Hospital St. Jude’s, a world leader in pediatric brain tumor research, conducts many low grade tumor trials and provides information relevant to each study. They also highlight trials that are ongoing using Non-St. Jude’s protocols.
Duke Medical Center Clinical trials at Duke Medical Center are broken down according to the patient’s diagnosis history. Tumors that are newly diagnosed vs. recurrent tumors create an outline of trials to consider.
Texas Children’s Cancer Center Clinical trials at Texas Children’s Cancer Center are broken down according to the patient’s diagnosis history. Tumors that are newly diagnosed vs. recurrent tumors create an outline of trials to consider.