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.