In 2009 Kristen Gillette began speaking with Dr. Peter Phillips, then Director of the Children’s Hospital of Philadelphia’s (CHOP) Neuro-Oncology Program, about a collaborative effort he and Dr. Tom Curran were starting among the country’s leading pediatric institutions. Seeking collaborative efforts where researchers work together rather than compete, The Kortney Rose Foundation (KRF) began funding the Children’s Brain Tumor Tissue Consortium (CBTTC) from inception. KRF continues to support its amazing growth. We believe collaborative research sharing specimens and data is the best hope to accelerate findings for children with brain tumors. The CBTTC is the largest biorepository on earth. What sets the CBTTC apart from other biorepositories is not only are the the specimens thoroughly genomically sequenced, and all activity pertaining to each specimen is thoroughly documented, but most importantly, all data is available to any researcher anywhere in the world via the first of its kind cloud-based tool called CAVATICA.


CHOP is the operations center of the CBTTC. Its responsibilities include the integration of genomic and molecular research, biorepository management and providing support for the informatics platforms of the CBTTC. This infrastructure is crucial to CBTTC’s ability to provide free and open access to brain tumor data to researchers throughout the world.


KRF funds were instrumental in growing the CBTTC infrastructure, providing for researchers’ time, and genomic sequencing, and allowed CHOP to hire a consulting agency that designed and built CAVATICA. The CBTTC and CAVATICA are managed by The Center for Data-Driven Discovery in Biomedicine (D3b) at CHOP. As a result, researchers can store, share and analyze genomic data sets in a more powerful way than ever before, accelerating discovery among the world’s research community.


“In fact, it is impossible to know how many patients’ lives have been — or will be — improved or saved thanks to this expression of Kortney Rose’s legacy. However, the lion’s share of their funds helped make possible the CBTTC — the first-of-its-kind pediatric brain tumor biorepository. Since its launch in 2013, the CBTTC has collected more than 30,000 brain tumor samples from over 3,000 patients. The genetic information is housed in CAVATICA, which has also been supported by the Kortney Rose Foundation. -CHOP Foundation

“In my opinion, one of the strengths of the CBTTC is the focus on high-quality, longitudinal clinical data. Tumor tissue alone is not the answer– we need to also understand why some children respond to treatment and others do not. We need clinical data to pair with the tumor data. This is what sets the CBTTC apart from traditional tissue banks, and how as a physician-scientist I’ll be able to find more effective cancer treatments.”


Angela J. Waanders, MD, MPH,
Director, Precision Medicine Oncology; Ann & Robert H. Lurie Children’s Hospital of Chicago
Director of Operations, Children’s Brain Tumor Tissue Consortium
Associate Professor of Pediatrics, Northwestern University Feinberg School of Medicine