ACCELERATE Consortium and Pediatric Brain Tumors Across Appalachia

Eric Durbin DrPH, MS University of Kentucky

With its operations center housed at the Center for Data Driven Discovery in Biomedicine (D3b) at Children’s Hospital of Philadelphia (CHOP), Children’s Brain Tumor Network (CBTN) is a network of more than 25 international children’s hospitals and research centers dedicated to creating a world where no child dies or suffers from a brain tumor.


By Al Leszczynski on behalf of CBTN & D3b


The goal and vision of the Children’s Brain Tumor Network (CBTN) is to connect researchers globally to accelerate the pace of discovery of new treatments for childhood brain cancers. This mission is supported through CBTN’s dedication to open science and sharing of resources.  

This commitment is reflected in the recent partnership between CBTN and the team led by Dr. Eric B. Durbin at the University of Kentucky, who are leveraging resources and analysis tools provided by CBTN to expanding cancer research across the state of Kentucky and the broader Appalachian region. 

Understanding health disparities as they relate to the incidence and prevalence of cancer is considered a hallmark area of study in the pursuit of effective treatments. Dr. Durbin has decades of experience supporting such research by using cancer data to highlight and better understand the distribution of cancers across groups of people.  

Mapping the incidence of pediatric cancers across Kentucky through analysis of 24 years of data, Durbin and his team have been able to identify patterns in cancer diagnoses. Data has revealed that the rates of brain cancers and specifically central nervous system (CNS) tumors in Kentucky are higher than the rest of the United States. Children in Appalachian regions of Kentucky face a 50% increased risk for brain cancers versus children elsewhere in the state. The highest rates of cancer are happening in the Eastern Appalachian region of Kentucky. However, even with decades of data available, the relative rarity of brain cancers and data associated with patients has some areas in great need of expanded research. 

Fortunately, using data made available through the Children’s Brain Tumor Network and the Gabriella Miller Kids First Data Resource Center, Durbin has been able to incorporate comparisons across all of Appalachia, not just Kentucky. 

Durbin’s work has gained the interest of the Kentucky state government, which provides funding through the Kentucky Pediatric Cancer Trust Fund. This funding was made possible through incredible advocacy from community members such as Jamie Bloyd, a parent of a childhood cancer survivor.   

One study funded through the Kentucky Pediatric Cancer Fund is the KY Pediatric Brain and CNS Tumor (PBCNST) Study. The two main research aims of this project are: 

  1. To better understand a cluster of counties with high rates of pediatric brain and CNS tumors in Kentucky through deeper study of environmental factors such as toxin analysis related to pollution. 
  1. To optimize data collection and flow from the Kentucky PBCNST study to collaborators such as the Children’s Brain Tumor Network. 

 The ability to compare data from Kentucky with data from around the country is a game changer for better understanding of these patterns. This expansion has confirmed that the incidence of pediatric CNS tumors has increased across all of Appalachia, not just areas contained within Kentucky.  

These revelations have set the groundwork for continued research collaboration between the Children’s Hospital of Philadelphia and Kentucky researchers. This is particularly important as Pennsylvania is an Appalachian state and there is evidence that children living in these Appalachian regions are experiencing higher risk of brain cancers regardless of state. 

Some challenges Dr. Durbin and his team have faced during this work include the fact that biorepositories generally represent a biased sample. Those biorepositories, centralized collections of tumor specimens, generally contain samples from children who attend advanced academic and medical research centers for treatment. This is not representative of the patients in Appalachia, who may not have access to such cutting-edge research centers. This challenge is being overcome through collaboration and open source science with the development of a virtual tissue repository. The SEER Virtual Tissue Repository is a new resource being developed by the National Cancer Institute’s (NCI) SEER Program and has enabled the expansion of access to population-based specimens for cancer research.  

The CBTN, and its operations center at the Children’s Hospital of Philadelphia’s Center for Data Driven Discovery in Biomedicine (D3b) have been able to support this work through the sequencing of samples from areas of particular interest in Kentucky. This involves Whole Genome Sequencing, a mapping of all of the genes in a tissue sample, and RNA sequencing, which analyzes the presence and concentration of RNA in a specimen. Both analyses can reveal patterns in tumor samples that would otherwise be overlooked. Tissues are sent to the Children’s Brain Tumor Network, sequencing is completed, and that data is added to CAVATICA and becomes available for use by all research groups. Durbin’s team had a goal of a collection of 250 specimens, and as of May 2021, 258 specimens have been acquired from collaborating institutions. There has also been an enthusiastic response from affected families. 62 patient families have already agreed to participate and many more are still to be contacted.  

The pandemic has partially delayed this project, but Dr.Durbin’s team is working directly with CHOP and CBTN to make sure specimens are still being processed and analyzed. This collaboration is accelerating the pace at which Durbin’s team can expand their initial analysis and will hopefully lead to the advancement of diagnostics and treatment for children experiencing brain cancers in the Appalachian regions. 

The success of this work has supported the development of ACCELERATE, the Appalachian and Inner-city Pediatric, Adolescent, and Young Adult Cancer Data Ecosystem Consortium which focuses on underserved regions experiencing increased cancer burden throughout the Appalachian region. Currently, work is being completed to develop a data sharing framework for ACCELERATE, establishing Internal Review Boards and Data Governance boards to ensure research compliance, and to identify and develop the technical resources needed to support this ongoing work. 

Stay updated with this project and more from CBTN by visiting the Presentations, Publications, and Projects pages available at 


Could your work benefit from the inclusion of data from the Children’s Brain Tumor Network? Data sharing is an integral part of this work – contact us to connect with resources and experts to support you and your research. Start your collaboration today by contacting