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Chordoma Foundation Biobank collaborates with Children's Hospital of Philadelphia

Together, we will continue to speed the path toward better treatments and a cure.


Last fall, the Chordoma Foundation launched a groundbreaking collaboration with Children’s Hospital of Philadelphia (CHOP), one of the nation’s leading research institutions, with the goal of speeding and improving biospecimen based research. Formed within CHOP’s Center for Data Driven Discovery in Biomedicine (D³b), an innovative healthcare discovery ecosystem that creates open-access platforms which integrate complex genomic and clinical patient data, the collaboration has created a powerful clinical research infrastructure that is accelerating the study of chordoma in labs around the world.

Specifically, the collaboration establishes CHOP as the official Coordinating Center of the Chordoma Foundation Biobank, which stores and distributes the tumor tissue and blood samples needed to advance chordoma research. It also makes CHOP the clinical and genomic data management center for the Chordoma Foundation, leveraging their robust informatics database to usher new chordoma discoveries from lab to clinic.

“It’s like we hit the lottery. In CHOP we have found a partner that understands and shares our urgency for new discoveries in chordoma biology and treatment, and can also connect us to a larger cloud of cancer research and data that will bring chordoma learnings into context with other rare cancers.”

– Patty Cogswell, Chordoma Foundation Manager of Research

One of the most exciting aspects of this collaboration is that in addition to streamlining our biospecimen collection, management, and distribution, it will also provide chordoma investigators with access to centralized, web-based research and informatics platforms through which they can ask specific questions in real-time and build customized data sets to study. This type of integrated queryable database is incredibly unique and brings with it the eventual possibility of uniting and standardizing clinical and genomic datasets across the rare disease space and enabling the type of comparative analysis that could improve care and treatment for several diseases.

Adam Resnick, PhD

“In the rare disease community, there’s power in numbers. By integrating across diseases, and uniting communities that have already self-organized, we’re able to share data across multiple diseases and accelerate discovery in ways that can directly impact new drug development.”

– Adam Resnick, PhD, Director, Center for Data Driven Discovery in Biomedicine, Children’s Hospital of Philadelphia

Progress to-date

The Foundation has already transferred all 200+ existing chordoma biospecimens, including clinical and molecular data – as well as genomic data from available chordoma cell lines and animal models – into D³b, where chordoma researchers will soon be able to access and query both the data and the available samples.

Moving forward, our vision is that new chordoma samples and data will continue to be integrated into centralized databases at CHOP and made available to interested investigators through an online platform designed to mimic an Amazon shopping cart. This platform – which is not yet available for chordoma but exists at CHOP in other capacities – will eventually allow researchers to search de-identified specimens by different clinical parameters such as patient age at diagnosis, type of treatment, match for recurrence and type of sample availability (e.g., blood, DNA, RNA) and build a customized “cart” to help inform a particular research project.

In addition to the Foundation’s biobank samples, chordoma researchers looking for additional biospecimen related data (whole genome sequencing, RNA sequencing, etc.) can also request access to other pediatric specimens databases managed by D3b at CHOP, making it easier to obtain a large cohort of samples.

What does this mean for patients?

Put simply, this collaboration will make it easier for researchers to access the tissue and blood samples provided by chordoma patients and help to bring chordoma learnings into context with the rest of the rare community.

Basic research processes that, in the past, might have taken decades to execute, and even more to move into human clinical trials, have now been compressed thanks to the integration of clinical, biospecimen, and genomic data. And by contributing their samples patients are directly involved in speeding that timeline.

The people behind the alliance

As the first private patient foundation to collaborate with D³b at CHOP, CF has paved the path for other such collaborations, and become a model for rare cancer research integration. But the real magic of the alliance has been in the individuals who came up with and championed these efforts on both sides of the table.

At CHOP, the key players have been Dr. Angela Waanders (Attending Physician, Neuro-Oncology Program), Dr. Adam Resnick (Director of D³b), and Jennifer Mason (Operations Manager, Children’s Brain Tumor Tissue Consortium). Their conviction, ingenuity, and persistence have not only made the collaboration possible but taken it in directions we only dreamed it could go.

Adam and Angela both started their careers in the lab doing molecular research, and it was there that they realized that meaningful findings would never happen without some established mechanism for sharing tissue and data. This revelation led to the creation of the Children’s Brain Tumor Tissue Consortium (CBTTC). A collaborative, multi-institutional research program dedicated to the study and treatment of childhood brain tumors, CBTTC supports the research of new prognostic biomarkers and therapies for children with pediatric brain tumors.

As scientific co-chair of CBTCC, Adam already had significant experience organizing, designing and building big data platforms when he came into contact with CF over two years ago.

“The prospect of working with a community as well-organized and forward-thinking as chordoma was exciting for us. We already had a reliable way to store and share samples and data; and had begun the process of creating disease models, including a chordoma cell line. Even though the collaboration required both organizations to forge new ground, we knew we had an opportunity to capitalize on this unique moment in time when cloud computing and platform infrastructure could actually bring people from across the world together to work in a single environment for the benefit of patients.”

– Adam Resnick, PhD, Director, Center for Data Driven Discovery in Biomedicine, Children’s Hospital of Philadelphia

Recognizing the doors it could open for both patients and researchers, the teams at CHOP and CF undertook the daunting task of creating a first-of-its-kind collaboration which we both believe will pave the way for other rare cancer communities to engage in similar discovery efforts. Recognizing the power of data to traverse clinical care, informatics, and bench research – we created a partnership based on mutual trust that combines robust data with empowered patients to speed the path to new discoveries and treatments.

We feel fortunate to be collaborating with such bright, professional and enthusiastic partners at CHOP, and look forward to working with them to make chordoma samples and data more easily accessible. Together, we will continue to speed the path toward better treatments and a cure.

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