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Research Project on DIPG, Diffuse Intrinsic Pontine Glioma

by Genessa Kahn

Definition- Diffuse intrinsic pontine gliomas (DIPGs) are aggressive and difficult to treat brain tumors found at the base of the brain. They are glial tumors, arising from glial tissue, that normally help support and protect the brain's neurons. These tumors are found in an area of the brainstem called the pons, which controls many of the body's most vital functions such as breathing, blood pressure, and heart rate. DIPGs are most commonly found in younger children at a median age of 6.8 years (from 0-26.8 years of age). The average survival after initial diagnosis is less than a year (9~11 months).

The symptoms of DIPG usually develop exceptionally quickly before the diagnosis of DIPG, reflecting the quick and insidious development of these tumors. Most patients begin encountering various clinical presentations less than three months, usually less than three weeks, prior to diagnosis. 

The most common symptoms include:

  • Issues controlling facial and eye movements, speech, chewing, and swallowing
  • Weakness in limbs
  • Problems with walking and coordination

Diagnosis- Doctors usually stage DIPG tumors based on MRI or biopsy results. Low-grade DIPG tumor cells, or in stages I or II, are closer to normal cells. High-grade DIPG tumor cells, or in stages III or IV, are more aggressive cancers.

Methods of diagnosis:

Computerized tomography scan (CT or CAT scan) – a diagnostic imaging procedure that uses a combination of several scans to show the inside of the body. These scans are more detailed than general X-rays, and can even be used to create 3 dimensional images.
Magnetic resonance imaging (MRI) – a diagnostic procedure that uses radiology, a type of imaging technology, to produce detailed images of structures and processes within the body. MRI provides greater detail than CT scans, and allows for an easier distinguishing of tumors, swelling potentially related to tumors, and normal tissue.

Biopsy – Given the current developments, it has now been possible to safely biopsy DIPG. Biopsies allow doctors to test for abnormalities, and determine if they may have been caused by cancer, by simply extracting a sample of cells or tissue for examination.

Treatments:

Radiation therapy – Radiation is the only treatment proved with limited efficacy in prolonging progression-free survival. It uses radiation to damage or kill cancer cells and shrink tumors. Limited-field radiation is known to produce reactions in around 90 percent of DIPG patients. However, these are temporary responses, often lasting on average for about six to nine months. In addition, the side effects from radiation significantly impact the quality of patients’ lives.

Experimental chemotherapy – Chemotherapy and biologic therapy in combination with radiation therapy is currently being studied as a potential treatment for DIPG. However, it has been found that routine chemotherapy does not impact survival rates. Agents targeting other biological or molecular pathways has also been shown to be ineffective. More studies in underlying tumor biology and molecular mechanisms are needed.

Surgery — Surgery is rarely used to diagnose DIPG due to the risks involved in surgery in this area of the brain. There are cases where a biopsy can be obtained safely, but the use of surgery to remove the tumor is very rare. Depending on the location of the DIPG, surgery is usually not considered an option.

Outlook- Brain tumors remain the most common cause of cancer-related death in children, and DIPG is the leading cause of death from pediatric brain tumors. There is still no effective treatment and no chance of survival. Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. The median survival time is 9 months from diagnosis.

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DIPG Clinical Trials

  1. Drug: Melphalan hydrochloride, The Johns Hopkins Hospital Baltimore, Maryland, United States
  2. Other: Specialized tumor board recommendation, Radiation: Standard radiation therapy Rady Children's Hospital San Diego, California, United States, UCSF Helen Diller Family Comprehensive Cancer Center San Francisco, California, United States, Children's National Medical Center Washington, District of Columbia, United States
  3. Drug: Nimotuzumab+CRT(concurrent IMRT and TMZ) The Third People's Hospital of Zhengzhou, Zhengzhou, Henan, China, Xiangya Hospital of Centre-south University
    Changsha, Hunan, China, West China Hospital, Sichuan University Chengdu, Sichuan, China
  4. Drug: Convection Enhanced Delivery (CED) of Nanoliposomal irinotecan (nal-IRI) University of California, San Francisco, California, United States
  5. Radiation: Hypofractionated Radiotherapy, University of Cincinnati
    Cincinnati, Ohio, United States
  6. Drug: Gemcitabine, Children's Hospital Colorado, Aurora, Colorado, United States
  7. Radiation: Palliative re-irradiation for progressive DIPG in children, Hadassah Medical Organization Jerusalem, Israel
  8. Drug: Panobinostat Nanoparticle Formulation MTX110, Drug: Convection-Enhanced Delivery (CED), University of California, San Francisco, San Francisco, California, United States, Memorial Sloan Kettering Cancer Center New York, New York, United States
  9. Other: Laboratory Biomarker Analysis, Radiation: Radiation Therapy, Drug: Temsirolimus, Drug: Vorinostat, M D Anderson Cancer Center
    Houston, Texas, United States
  10. Radiation: Palliative re-irradiation for progressive DIPG in children, Hadassah Medical Organization, Jerusalem, Israel
  11. Drug: Panobinostat Nanoparticle Formulation MTX110, Drug: Convection-Enhanced Delivery (CED), University of California, San Francisco, California, United States, Memorial Sloan Kettering Cancer Center, New York, New York, United States
  12. Drug: Bevacizumab, Drug: Erlotinib, Drug: Temozolomide, Radiation: Radiation, Phoenix Children's Hospital Phoenix, Arizona, United States, Children's Hospital Los Angeles Los Angeles, California, United States, Stanford University/Lucile Packard Children's Hospital Palo Alto, California, United States
  13. Other: Laboratory Biomarker Analysis, Radiation: Radiation Therapy, Drug: Temsirolimus, Drug: Vorinostat, M D Anderson Cancer Center
    Houston, Texas, United States
  14. Drug: vandetanib and dasatinib, St. Jude Children's Research Hospital
    Memphis, Tennessee, United States
  15. Radiation: re-irradiation, Alberta Children's Hospital Calgary, Alberta, Canada, Drug: PTC596, Radiation: Radiotherapy, Children's Hospital Colorado Aurora, Colorado, United States, Children's National Medical Center Washington, District of Columbia, United States, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States
  16. Drug: Crizotinib, Drug: Dasatinib, St. Jude Children's Research Hospital
    Memphis, Tennessee, United States, Biological: K27M peptide, Drug: Nivolumab, Rady Children's Hospital-San Diego, San Diego, California, United States, UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, California, United States, Children's National Medical Center, Washington, District of Columbia, United States
  17. Drug: Cilengitide dose escalation, Drug: Cilengitide, Radiation: Concomitant radiotherapy, Hôpital des Enfants, Groupe Hospitalier Bordeaux, France, Centre Oscar Lambret, Lille, France, Centre Léon Bérard, Lyon, France
  18. Biological: Immunomodulatory DC vaccine to target DIPG and GBM, Shenzhen Geno-immune Medical Institute, Shenzhen, Guangdong, China, Shenzhen Children's Hospital, Shenzhen, Guangdong, China, Department of Neurosurgery, Shenzhen Hospital, Southern Medical University, Shenzhen, Guangdong, China
  19. Drug: Indoximod, Radiation: Partial Radiation, Radiation: Full-dose RadiationAugusta University, Georgia Cancer Center Augusta, Georgia, United States, Emory University, Children's Heathcare of Atlanta
    Druid Hills, Georgia, United States
  20. Biological: Tumor Lysate Vaccine, Drug: Imiquimod, Radiation: Radiation therapy, Masonic Cancer Center, University of Minnesota, Minneapolis, Minnesota, United States
  21. Drug: Crenolanib, St. Jude Children's Research Hospital Memphis, Tennessee, United States
  22. Drug: Temozolomide, Drug: Bevacizumab, Drug: Irinotecan, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
  23. Drug: ribociclib, Drug: Everolimus, Children's National Medical Center
    Washington, District of Columbia, United States, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States, Levine Cancer Institute
    Charlotte, North Carolina, United States
  24. Drug: Marizomib, Drug: Panobinostat, Boston Children's HospitalBoston, Massachusetts, United States, Dana-Farber Cancer Institute Boston, Massachusetts, United States
  25. Radiation: 3-Dimensional Conformal Radiation Therapy, Radiation: Intensity-Modulated Radiation Therapy, Other: Laboratory Biomarker Analysis, Drug: Vorinostat, Children's Hospital of Alabama, Birmingham, Alabama, United States, University of Alabama at Birmingham Cancer Center Birmingham, Alabama, United States, Providence Hospital Mobile, Alabama, United States
  26. Biological: SCRI-CARB7H3(s); B7H3-specific chimeric antigen receptor (CAR) T cel, Seattle Children's Hospital Seattle, Washington, United States
  27. Drug: Antineoplaston therapy (Atengenal + Astugenal), Burzynski Clinic
    Houston, Texas, United States
  28. Drug: GD2 CAR T cells, Drug: Fludarabine, Drug: Cyclophosphamide Lucile Packard Children's Hospital (LPCH) Stanford, California, United States
  29. Drug: Abemaciclib, Phoenix Children's Hospital Phoenix, Arizona, United States Children's Hospital Colorado Aurora, Colorado, United States Children's Healthcare of Atlanta, Egleston, Atlanta, Georgia, United States Children's Healthcare of Atlanta, Scottish Rite Atlanta, Georgia, United States
  30. Procedure: Diffusion Tensor Imaging, Procedure: Diffusion Weighted Imaging, Procedure: Dynamic Contrast-Enhanced Magnetic Resonance Imaging, Children's Hospital Los Angeles Los Angeles, California, United States, Lucile Packard Children's Hospital Stanford University Palo Alto, California, United States Children's Hospital Colorado Aurora, Colorado, United States
  31. Drug: ONC201, UCSF, Benioff Children's Hospital San Francisco, California, United States, Miami Cancer Institute Miami, Florida, United States, Children's Healthcare of Atlanta, Emory University School of Medicine Atlanta, Georgia, United States
  32. Drug: LBH589, Children's Hospital Los Angeles
    Los Angeles, California, United States, Stanford University and Lucile Packard Children's Hospital Palo Alto, California, United States, Children's National Medical Center Washington, District of Columbia, United States
  33. Biological: DNX-2401, Clinica Universidad de Navarra Pamplona, Navarra, Spain
  34. Drug: Adavosertib, Other: Laboratory Biomarker Analysis, Other: Pharmacological Study, Radiation: Radiation Therapy Children's Hospital of Alabama
    Birmingham, Alabama, United States, Children's Hospital Los Angeles
    Los Angeles, California, United States, Children's Hospital of Orange County
    Orange, California, United States
  35. Drug: Nimotuzumab, Drug: Vinorelbine, Other: Radiotherapy, Fondazione IRCCS Istituto Nazionale Tumori Milan, Italy
  36. Procedure: adjuvant therapy, Biological: pegylated interferon alfa National Institutes of Health Clinical Center, 9000 Rockville Pike Bethesda, Maryland, United States
  37. Drug: DSP-7888, National Hospital Organization Nagoya Medical Center
    Nagoya, Aichi, Japan Kanagawa Children's Medical Center Yokohama, Kanagawa, Japan, Osaka University Hospital Suita, Osaka, Japan
  38. Biological: TTRNA-DC vaccines with GM-CSF, Biological: TTRNA-xALT, Drug: Cyclophosphamide + Fludarabine Lymphodepletive Conditioning, UF Health Shands Children's Hospital Gainesville, Florida, United States
  39. Drug: GDC-0084, Radiation: radiation therapy, St. Jude Children's Research Hospital
    Memphis, Tennessee, United States
  40. Biological: nimotuzumab (anti EGFR humanized monoclonal antibody) Children's Hospital/University of Colorado Denver, Colorado, United States Children's National Medical Center Washington, District of Columbia, United States, University of Florida Shands Cancer Center Gainesville, Florida, United States
  41. Drug: Fimepinostat, Procedure: Therapeutic Conventional Surgery, Rady Children's Hospital San Diego, California, United States, University of California, San Francisco
    San Francisco, California, United States, University of Florida Gainesville, Florida, United States
  42. Genetic: (C7R)-GD2.CART cells, Drug: Cyclophosphamide, Drug: Fludarabine, Texas Children's Hospital Houston, Texas, United States
  43. Radiation: Radiation Therapy, Orlando Health Orlando, Florida, United States, University of Texas MD Anderson Cancer Center Houston, Texas, United States
  44. Drug: Temozolomide + Valproic Acid, Drug: Temozolomide + Chloroquine, Klinikum Augsburg Augsburg, Germany, Evangelisches Krankenhaus Bielefeld Bielefeld, Germany, Universitätsklinikum Bonn Bonn, Germany
  45. Drug: Savolitinib, Children's Hospital Los Angeles Los Angeles, California, United States, Lucile Packard Children's Hospital Stanford University Palo Alto, California, United States, Children's Hospital Colorado Aurora, Colorado, United States
  46. Drug: Infusate with MTX110 and gadolinium, Device: Convection-Enhanced Delivery (CED), Columbia University Irving Medical Center New York, New York, United States
  47. Drug: REGN2810 (monotherapy), Drug: REGN2810 (maintenance), Radiation: Conventional or hypofractionated, Radiation: Re-irradiation, Children's Hospital Los Angeles (CHLA) Los Angeles, California, United States, Rady Children's Hospital
    San Diego, California, United States, UCSF Benioff Children's Hospital
    San Francisco, California, United States
  48. Radiation: 3-Dimensional Conformal Radiation Therapy, Radiation: Intensity-Modulated Radiation Therapy, Other: Laboratory Biomarker Analysis, Children's Hospital Los Angeles Los Angeles, California, United States, Lucile Packard Children's Hospital Stanford University Palo Alto, California, United States, Children's National Medical Center Washington, District of Columbia, United States
  49. Drug: Valproic acid, Drug: Bevacizumab, Radiation: Radiation therapy, University of Oklahoma Health Sciences Center Oklahoma City, Oklahoma, United States, Children's Medical Center Dallas, Center for Cancer and Blood Disorders Dallas, Texas, United States, Cook Children's Medical Center Fort Worth, Texas, United States, Texas Children's Hospital Houston, Texas, United States
  50. Drug: temozolomide, Procedure: adjuvant therapy, Radiation: radiation therapy, Comprehensive Cancer Center at University of Alabama at Birmingham, Birmingham, Alabama, United States, University of South Alabama Cancer Research Institute Mobile, Alabama, United States, Phoenix Children's Hospital Phoenix, Arizona, United States
  51. Other: Specialized tumor board recommendation, University of California, San Diego Rady Children's Hospital San Diego, California, United States, University of California, San Francisco San Francisco, California, United States, Children's National Medical Center Washington, District of Columbia, United States
  52. Drug: Mebendazole, Drug: Vincristine, Drug: Carboplatin, Cohen Children's Medical Center of New York New Hyde Park, New York, United States
  53. Drug: CLR 131, Lucile Packard Children's Hospital Palo Alto, California, United States, Texas Children's Hospital Houston, Texas, United States, University of Wisconsin Hospital and Clinics Madison, Wisconsin, United States
  54. Drug: INCB7839, Children's Hospital Los Angeles, Los Angeles, California, United States, Lucile Packard Children Hospital Stanford University Palo Alto, California, United States, Children's Hospital Colorado Aurora, Colorado, United States
  55. Biological: APX005M treatment for recurrent or refractory primary malignant CNS tumor patients, Biological: APX005M treatment for newly diagnosed DIPG patients, Children's Hospital Los Angeles, Los Angeles, California, United States, Lucile Packard Children Hospital Stanford University Palo Alto, California, United States, Children's Hospital Colorado Aurora, Colorado, United States
  56. Drug: Everolimus, Other: Laboratory Biomarker Analysis, Other: Pharmacological Study, Drug: Ribociclib, Children's Hospital Los Angeles,Los Angeles, California, United States, Lucile Packard Children Hospital Stanford University Palo Alto, California, United States, Children's Hospital Colorado Aurora, Colorado, United States
  57. Other: Laboratory Biomarker Analysis, Biological: Sargramostim, Biological: Wild-type Reovirus, Mayo Clinic Rochester, Minnesota, United States
  58. Radiation: Hypofractionated radiotherapy, Radiation: Conventional arm, Children's Cancer Hospital Egypt 57357 Cairo, Egypt
  59. Drug: BXQ-350, Cincinnati Children's Hospital Medical Center Cincinnati, Ohio, United States, Nationwide Children's Columbus, Ohio, United States
  60. Drug: 9-ING-41, Drug: Irinotecan, University of Chicago
    Chicago, Illinois, United States, Levine Cancer Center Charlotte, North Carolina, United States, Brown University Providence, Rhode Island, United States
  61. Drug: Palbociclib, Drug: Temozolomide, Drug: Irinotecan, Children's of Alabama
    Birmingham, Alabama, United States, Phoenix Children's Hospital, Phoenix, Arizona, United States, Children's Hospital Los Angeles, Los Angeles, California, United States
  62. Drug: Indoximod, Drug: Temozolomide, Radiation: Conformal Radiation, Children's Hospital Colorado, Aurora, Colorado, United States, Arnold Palmer Hospital for Children, Orlando, Florida, United States, Children's Heathcare of Atlanta
    Atlanta, Georgia, United States
  63. Drug: SIACI of Erbitux and Bevacizumab, Weill Cornell Medical College/New York Presbyterian Hospital New York, New York, United States
Background on Genessa Kahn

November 2020

Genessa Kahn is currently a sophomore at Townsend Harris High School at Queens College, which is ranked #1 in New York High Schools and #5 in the United States High Schools according to US News. Genessa has been a dedicated Girl Scout since 2014, and has undertaken numerous awards such as the Girl Scout Silver Award and the Girl Scout Bronze Award. After hearing the stories of teens her age who had combatted Diffuse Intrinsic Pontine Glioma, DIPG, Genessa became quite interested in the research being done regarding DIPG, and thus partnered with ICAN on her Girl Scout Gold Award project to help develop an ICAN DIPG webpage. She strives to bring awareness regarding pediatric cancers to young people and students so they develop understanding for their peers.

For this, I am dedicating my project to all DIPG patients and their parents, as well as all the neuro-oncologists around the world who are assisting in the development of DIPG clinical trials.—Genessa Kahn

Please send any questions or comments to DIPGProject@askican.org

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