Overview
The Chordoma Foundation leads a coordinated international effort to cure chordoma. We take a big-picture,
systems-based approach to the problem of curing this orphan bone cancer, ensuring that time and resources
are focused to achieve maximum results as quickly as possible. With the input of a diverse group of medical
and scientific experts from around the world, we have created a roadmap for developing new effective
treatments for chordoma and to serve as the engine to drive this plan forward. Because subsets of cancers
affecting different organs can share the same molecular cause, we believe that developing targeted treatments
for chordoma would very likely result in new therapies for a subset of many other more common cancers.
Immediate research priorities:
- Establish Chordoma Foundation BioBank
- Create a panel of well characterized chordoma cell lines
- Develop animal models
The exchange of data, resources, and ideas is crucial for making progress towards a cure. The Chordoma
Foundation acts as a hub to connect and synchronize research teams from around the globe. To promote communication
and collaboration, the Foundation hosts annual international research workshops, coordinates local research
meetings and conference calls, and hosts an online research forum. Beyond simply connecting researchers, the
Foundation proactively distributes new data to labs it knows are equipped to follow up on the findings, ensuring
that discoveries rapidly progress through the research roadmap.
Grants and Funding
Like many orphan diseases, chordoma research suffers from a lack of funding. To fill this funding
gap, the Chordoma Foundation will fund investigator-initiated projects that seek to uncover driving
mechanisms in chordoma pathogenesis. The Foundation will also proactively award a combination of
grants and contracts to researchers and contract research organizations (CROs) to carry out specific
aspects of the research roadmap such as creating cell lines and animal models, performing drug
screening, and genomic profiling.
To fund the research roadmap, the Foundation aims to raise $3 million by 2009.
BioBank
To develop effective treatments for chordoma, researchers need to study chordoma tumors. Currently, research is hindered because it is
very difficult or impossible for most researchers to access chordoma tissue. We have identified dozens of researchers across the world
who are eager to study chordoma if they could just get tissue.
Surprisingly, the majority of chordoma tumors (beyond what is required for pathological diagnosis) are NOT saved by hospitals, meaning
that this precious scientific resource is lost forever. We must not let this continue!
To ensure that chordoma tumors are properly saved and made available to researchers we are establishing the Chordoma Foundation BioBank
(see below for description). This is our highest priority and is essential to finding a cure. The Chordoma Foundation BioBank will
enable researchers from multiple fields to apply the latest scientific advances to understand the cause of chordoma and develop new
treatments. The BioBank will also create opportunities for new researchers to begin studying chordoma.
What is the BioBank?
The Chordoma Foundation is creating a centralized repository of tissue, blood, genetic information and clinical data that is voluntarily
obtained from people with chordomas. All material is collected in a standardized manner with a high level of quality assurance to prevent
inconsistencies that currently exist when tumors are stored at different hospitals. All Chordoma Foundation BioBank material will be
stored in a private, confidential, state-of-the-art storage facility. An oversight board will make decisions about distribution of material
from the BioBank to researchers who meet strict criteria.
By collecting detailed ongoing clinical information from chordoma patients, the BioBank will allow researchers to identify connections
between specific tumor characteristics and clinical outcomes. This will help identify cellular processes responsible for chordomas
malignant behavior, and may one day lead to more precise and rational treatments tailored to patient's individual tumors.
Donating to the BioBank
Fresh tumor is the starting point for virtually all research on chordoma. Your tissue is your property and it is literally worth its
weight in gold. If you have not yet had surgery, you can help advance chordoma research by requesting that your tumor tissue be frozen.
Before your surgery, notify your surgeon verbally and/or in writing that you want as much of your tumor saved as possible. After surgery
request confirmation from your surgeon and/or pathologist that your tumor was in fact frozen.
When the BioBank is established, you can request that a portion of your tumor be sent directly to the Chordoma Foundation. For now,
please notify
SimoneSommer@ChordomaFoundation.org before
you have surgery. Once the BioBank has been set up we will follow up with you and your surgeon to retrieve the tissue.
Cell Lines
Cell lines are tumor cells that grow and multiply indefinitely in plastic containers. Cell lines can be used as a model to study the
behavior of tumor cells and to measure the effect different drugs have on the cells. Using cell lines, researchers test thousands of
chemicals to kill the tumor cells without actually giving those chemicals to people. Cell lines are therefore absolutely essential for
developing and testing drugs to treat chordoma.
Because all chordomas are slightly different, scientists need many high quality chordoma cell lines to be able to develop drugs that
will target chordoma. Before any experiments or drug testing can be performed, cell lines must be extensively studied and characterized
to ensure that they are a realistic model of actual chordoma tumors. This process can be quite expensive and time consuming. Therefore
the foundation will fund researchers to establish and characterize new chordoma cell lines that are so vital for research. A standardized
collection of high quality cell lines will be stored in the BioBank and distributed to researchers so that all data from multiple labs
can be matched to the same cell lines.
Animal Models
Animal xenografts (human tumors implanted in animals), and transgenic animals (animals genetically engineered to develop specific
tumors) - broadly referred to as models – allow researchers to study tumors within a living organism rather than on plastic. These
models are critical to understanding the multiple factors that contribute to tumor progression. Animal models are an invaluable tool
both for exploring the effect of drugs on chordoma cells and for predicting response to particular drugs in humans.