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CHOP’s Center for Data Driven Discovery in Biomedicine Joins the Division of Neurosurgery and Neuro-Oncology Program to Honor Brain Tumor Awareness Month

According to the Central Brain Tumor Registry of the United States (CBTRUS), an estimated 86,970 new cases of primary malignant and non-malignant brain and central nervous system (CNS) tumors are expected to be diagnosed in the US by the end of 2019.  Nearly 4,000 of those new tumor diagnoses will be applied to children under the age of 14. An additional 12,290 new cases of brain and CNS tumors will be found in Adolescents and Young Adults (AYA) by the end of this year.

Brain and CNS tumors are the most prevalent form of pediatric cancer in children under age 19, and are currently the leading cause of cancer-related deaths among children and adolescents.

Each year, during the month of May, the international community of brain tumor patient groups, foundations, researchers, and medical institutions honor those affected by brain and CNS tumors through the observance of Brain Tumor Awareness Month. This May, the Children’s Hospital of Philadelphia’s (CHOP) Center for Data Driven Discovery in Biomedicine (D3b) partnered with the Division of Neurosurgery and the Neuro-Oncology Program to honor the knowledge, dedication, and compassion of the clinicians, researchers, healthcare professionals at CHOP who are all working to ease suffering and find cures for children diagnosed with brain and CNS tumors.

Highlighting the CHOP Brain Tumor Program

The D3b partnered with the social media team at the CHOP Cancer Center to release Brain Tumor Awareness Month-related content on the Hospital’s Twitter and Facebook pages, including a new video series highlighting the dedicated team within the CHOP Brain Tumor Program, with the goal of raising awareness about the broad array of treatment and support services available to patients and families navigating treatment for brain and spinal cord tumors at CHOP:

Brain Tumor Program at CHOP – Social Work
https://www.facebook.com/cancercenteratCHOP/videos/430285764465746/

Social workers within the Brain Tumor Program at Children’s Hospital of Philadelphia provide a critical service to children and their families who have been diagnosed with a brain tumor.  In this video, Neuro-Oncology Social Workers Zoe Artz, MSW, LSW and Susan Pultman, LCSW, MEd describe this challenging, but ultimately fulfilling work – so important to the physical, emotional, and practical support of families.

Brain Tumor Program at CHOP – Neuropsychology
https://www.facebook.com/cancercenteratCHOP/videos/446284759461233/

Through each phase of a child’s brain tumor treatment journey, psychosocial services evaluate how well the child is functioning both intellectually and emotionally, while assessing brain function and the need for clinical intervention. In this video, Pediatric Neuropsychologist Iris Paltin, PhD explains how she helps families navigate the challenging effects of a childhood brain tumor diagnosis.

Brain Tumor Program at CHOP – Neuro-Oncology
https://www.youtube.com/watch?v=IoRYnQdpWeA&feature=youtu.be

The Neuro-Oncology team at CHOP seeks to not only cure brain and CNS tumors in children, but to do so in a way that has the lowest possible impact on a child’s overall physical and neurological health and development.  Towards meeting that goal, CHOP understands the critical need for research and collaboration within the lab and the clinic, involving a multidisciplinary approach. Hear from Chief of CHOP’s Neuro-Oncology Section Michael Fisher, MD, and Jane Minturn, MD, PhD, Attending Neuro-Oncologist and Director of Clinical Operations for the Brain Tumor Neuro-Oncology Program at CHOP about how the Brain Tumor Program strives for the best possible outcomes for children.

 

Brain Tumor Awareness Month Patient/Family Outreach

On May 2, May 9, and May 16, D3b and CHOP’s Brain Tumor Program presented a table in the Atrium of CHOP’s Main Campus in Downtown Philadelphia, where volunteers shared information with hospital guests about D3b, CHOP Neuro-Oncology/Neurosurgery, and our programs including the Children’s Brain Tumor Tissue Consortium (CBTTC) and the Pediatric Brain Tumor Atlas (PBTA) – as well as offering fun give-aways for children.

The D3b also sold Brain Tumor Awareness Month water bottles and t-shirts to raise money for the CBTTC’s Pediatric Brain Tumor Avengers team, which participates in the annual CHOP Parkway Run/Walk event, held in early autumn each year to raise money for pediatric cancer research. 100% of the funds raised by the Brain Tumor Avengers team will go toward growing and sustaining brain tumor research efforts at the CBTTC.

 

Raising Awareness Across Institutions

As operations center for the CBTTC – a multi-institutional collaborative effort launched at CHOP in 2011 –  the D3b partnered with each of the CBTTC’s 16 member institutions and 20 national and international childhood brain cancer foundations to launch a month-long social media campaign to highlight the wealth of research, talent, resources, and support efforts taking place across the CBTTC’s network of member institutions and supporting foundations to ease the suffering of children with brain and CNS tumors everywhere.

Carried out through the CBTTC’s Facebook and Twitter channels, the #BrainTumorAwarenessMonth campaign shared resources, statistics, infographics, blog posts, and more provided by each of the CBTTC’s foundation and institution partners to raise awareness about brain tumors in children and adolescents and to compel more researchers, patient families, and foundations to participate in the CBTTC’s efforts to accelerate the discovery of better treatments and cures for these diseases.

 

Background

Center for Data Driven Discovery in Biomedicine

The Center for Data Driven Discovery in Biomedicine’s (D3b) research programs continue to drive innovation in translational research discoveries, clinical trials, and standards of care for children and adults diagnosed with devastating diseases. D3b’s scientific expertise and diverse research platforms target pediatric cancers and diseases of childhood development, with pediatric brain tumors as a driving area of research emphasis.

Over the past three years, D3b has worked to develop a collaborative, translational, and trans-disciplinary research methodology to support and align with CHOP Neurosurgery’s research programs and objectives. The methodology is powered by newly-developed platforms that allow large-scale analytic computation, data harmonization, analysis, and visualizations, by collaborative and diverse sets of experts both at CHOP and across the globe.

D3b successfully developed and launched three powerful analytic platforms to help accelerate breakthroughs by researchers all over the world. These efforts are directly linked to increased efforts to remove the barriers to pediatric brain tumor and other pediatric cancer, developmental, and rare disease research efforts, enabling large-scale research in a way never before possible.

Today, researchers located anywhere in the world can log in, explore, analyze, and compute massive collections of high-quality data. D3b-developed platforms are helping redefine the traditional research model by improving collaboration across institutions and removing the primary barriers to research.


The Children’s Brain Tumor Tissue Consortium

D3b’s pioneering research project is the Children’s Brain Tumor Tissue Consortium (CBTTC). D3b is proud to house the CBTTC Operations Center, with the CBTTC’s co-Scientific Chair, Adam Resnickm PhD, also a director of D3b.

The Children’s Brain Tumor Tissue Consortium (CBTTC) is a collaborative, multi-institutional research program dedicated to the study and treatment of childhood brain tumors, and supports the research of new prognostic biomarkers and therapies for children with these diseases. As part of this research effort, the CBTTC has developed a network of informatics and data applications which allow researchers from across the world to work together to discover cures. “Innovation through collaboration” is made possible by the CBTTC’s state-of-the-art biorepository as well as expertise of leaders in the field of biomedicine.

The CBTTC consists of 16 primary member institutions and has enrolled more than 3,000 subjects and contains over 40,000 tubes of specimens; all highly annotated with longitudinal clinical data, genomic data, imaging and histology data and available for request by researchers across the world.

The CBTTC’s Pediatric Brain Tumor Atlas (PBTA) is one of the world’s largest pediatric brain tumor data sets and was released without embargo on September 10, 2018.  Searchable through the Gabriella Miller Kids First Data Resource Center, researchers are able to identify genomic and associated files and seamlessly integrate them into a Cavatica workspace for research on the raw genomic data. PBTA summary data is available on PedscBioPortal for analytic visualization.

Learn More about the CBTTC:
www.cbttc.org


Children’s Hospital of Philadelphia Division of Neurosurgery

CHOP’s Division of Neurosurgery offers a full range of inpatient and outpatient services to infants, children, and adolescents, performing more that 1,300 operative procedures per year across all surgical disorders of the central and peripheral nervous system including tumors, epilepsy, cerebral palsy, hydrocephalus, spina bifida, and vascular malformations.

As a leader in all areas of neurology, specialists from the Division of Neurosurgery participate in six different multi-disciplinary programs.  The Division also supports the top-funded basic science laboratory at CHOP, which has been awarded more than $20 Million in NIH grant funding. Additionally, they have pioneered multiple innovative research efforts with the goal of improving patient care and outcomes for patients both at CHOP and across the globe.

Learn More about the Division of Neurosurgery at CHOP:
https://www.chop.edu/centers-programs/division-neurosurgery

 

The Neuro-Oncology Program at Children’s Hospital of Philadelphia

CHOP’s Neuro-Oncology program is one of the largest groups dedicated to treating all types of pediatric brain and spinal cord tumors.  The Program sees more than 300 new patients each year and cares for more than 1,400 unique patients. Their diagnostic approach includes both tissue evaluation and molecular diagnosis that includes a 200-plus gene panel to identify specific mutations that can inform each patient’s individualized treatment plan.  Treatment strategies include surgery, chemotherapy, and proton radiation, which allows for effective targeting of the tumor with less toxicity than standard photon radiation.

The Program offers comprehensive diagnosis and interdisciplinary evaluation and treatment with input from neurosurgery, radiation oncology, neuroradiology, neuropathology, and neurology.  Every child treated in the Neuro-Oncology Program also benefits from CHOP’s integrated care model with input and support from experienced nurse practitioners, nurse navigators, social workers, psychologists, neuro-psychologists, and child life specialists.  Physical, occupational, and speech therapists are also part of this comprehensive interdisciplinary team.

The Program is highly invested in pediatric brain tumor research.  As part of the Children’s Oncology Group, Pacific Pediatric Neuro-Oncology Consortium, CONNECT Consortium (Collaborative Network for Neuro-Oncology Clinical Trials), and the Neurofibromatosis Clinical Trials Consortium, the team offers both institutional clinical trials and participates in cooperative group trials. The Program has more than 30 open clinical trials, offering cutting-edge therapies to patients.  Research includes the study of Low and High-grade Gliomas, Diffuse Intrinsic Pontine Gliomas, Medulloblastomas, and novel therapeutics that can hopefully one day be brought into the clinic.

Learn More about the Neuro-Oncology Program at CHOP:
https://www.chop.edu/centers-programs/neuro-oncology-program