We at Jack’s Angels are grateful to have the opportunity to share this with you. This and other innovative research projects for DIPG will be shared on this site regularly. For more information on the trial for DIPG, visit:
http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=1829
Dr. Mark Kieran, Director of the Pediatric Neuro-Oncology Center at Dana-Farber Cancer Institute, is leading a national, multi-institutional clinical trial entitled “Molecularly Determined Treatment of Diffuse Intrinsic Pontine Gliomas (DIPG).”
Diffuse Intrinsic Pontine Gliomas (DIPGs) are the most malignant tumors of childhood. These tumors have been historically diagnosed based on classic clinical symptoms at presentation in conjunction with an MRI scan that shows a large, diffusely expanded pons (region of the brain stem). Due to risks of neurosurgery as defined in the 1980s, biopsy was not routinely employed, and thus, tumor tissue from patients with DIPGs has not previously been available to study. Current national strategies have approached therapy for these tumors based on similarities to the most common adult malignant glioma, known as glioblastoma multiforme or GBM. Over the last few decades, hundreds of clinical trials have been conducted in children with DIPG and the results have demonstrated no improvement in response rate or long-term outcome. These findings would indicate that there may be significant differences in the underlying biology of adult GBM and pediatric DIPG. For this reason, and in conjunction with advances in neurosurgical techniques and molecular biology, Dr. Kieran has initiated a research protocol that biopsies the tumors of newly-diagnosed DIPG patients in order to obtain direct biologic information on these tumors and adapt a treatment approach based on the result of these biopsies. This protocol took 10 years from its initial proposal to approval and accrual for this multi-institutional trial has now begun. To date, 11 of 20 sites have opened the protocol, an additional 2 sites have received IRB approval to begin accrual and are awaiting regulatory approval, and 7 sites are still in the process of completing the regulatory documents needed for approval.
| As of 5/28/13, the following institutions are recruiting participants: |
• University of California, San Francisco
• Children’s Hospital Colorado
• Ann & Robert H Lurie Children’s Hospital of Chicago
• Johns Hopkins
• Dana-Farber Cancer Institute
• Children’s Hospitals and Clinics of Minnesota
• Washington University Medical Center
• New York University
• Doernbecher Children’s Hospital
• Penn State Hershey Medical Center
• UT Southwestern Medical Center
• Cook Children’s Medical Center
• Seattle Children’s Hospital
Jack’s Angels Foundation is dedicated to promoting awareness, support, and research for Diffuse Intrinsic Pontine Glioma, or DIPG. We are committed to promoting the most innovative research and clinical trials that will help shed light on the nature of DIPG and the genetic anomalies that cause it, that there be greater hope for survival. We appreciate very much your attention to the 2-300 children afflicted by this uncompromising disease each year in the United States alone. The median survival time is 9 months. (www.curesearch.org)
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