Our guest blogger this week, is Amanda Haddock. She lost her son to the most deadly type of brain cancer, Glioblastoma Multiforme (GBM.) She has since made it her mission to help find more effective treatments for kids with brain tumors, just as Thea's Star of Hope seeks to do. Hoping to turn this tragedy into something positive and help solve the riddle of cancer, she founded the Dragon Master Foundation, with the goal of using big data to help researchers identify patterns and further their research. Dragon Master supports the work of the CBTTC, at CHOP, as well. With this collaboration, we can help make a difference for all kids with brain tumors, around the world. Learn more about Dragon Master foundation at www.dragonmasterfoundation.org/
I think most parents of a child with cancer would tell you the same thing: it struck out of the blue. Kids don’t get cancer because they smoked too much or made other questionable lifestyle decisions. We don’t know what causes most childhood cancers, so when they strike, almost everyone is unprepared. We were no different.
My son David was a healthy, active 16 year old. He had spent the summer swimming, playing tennis and water skiing. He was looking forward to his junior year of high school and especially his Latin and Culinary Arts classes. He wanted to be a chef, and he was always coming up with some crazy food combination for us to try. He delighted in being “weird” and was a wonderful “outside the box” thinker.
Just days before school started, though, he got a ferocious headache that wasn’t relieved by prescription drugs. A CT scan at the local hospital showed a mass and blood in his brain, and so he got his first ambulance ride to the regional hospital to get an MRI. The MRI didn’t give us a lot more information, but his tumor was operable, and so they did a resection that confirmed a diagnosis of GBM.
GBM is the most deadly adult brain tumor, and a quick internet search showed us that Ted Kennedy had died from the same disease just one year earlier. We knew that if we were going to save David, it would have to be through innovation. We started on a journey that led us to a number of events with several different nonprofits that were trying to make a difference in the world of brain cancer research.
David was very interested in research and in helping other kids with cancer. He never asked for anything for himself, and he was always quick to volunteer for research studies that might give some insight into this insidious disease. We chose the path of clinical trials, and David had pretty good quality of life. However, GBM is a wicked opponent, and David passed away only 20 months after diagnosis. I still can’t believe how quickly he went from healthy young man to a son I will never see again. Devastating doesn’t begin to cover it.
Among all the things David was, he was also very stubborn. I knew that his death would not be a good enough excuse for me to stop fighting for a cure. If anything, we could feel his spirit pushing us onward and telling us we had to work twice as hard because he was no longer here to battle. So we pushed on, looking for ways to help researchers find a cure.
We heard Dr. Anna Barker speaking at a conference and saying that researchers needed to be able to compare genomic data. She said she thought that was the key to a cure. It seemed reasonable to us that compiling that data in one place would be extremely useful, and so we researched to find a project that was doing that. What we found was a lot of good projects that were working with different segments of research data, but none that had a goal or vision of combing the data for public access. All of the data seemed to exist in silos with lots of restrictions on who could use it and what could be done with the data. We envisioned something that researchers, patients and doctors could use to track down vital information that would help apply precision medicine initiatives.
At first, we thought we would have to build something from scratch, but then we found the Childhood Brain Tumor Tissue Consortium (CBTTC). This group of hospitals had already agreed to share data in a very open source format, and all we needed to do was help them build a platform that could house not only pediatric data and not only brain tumor data, but a wide variety of data from many disease cohorts. Including a broad range of information would allow us to better understand the differences and similarities between diseases and treatments so we might better harness the existing treatments and more quickly develop new ones.
There was already an existing network of nonprofits supporting the CBTTC in their efforts to build a database and user-friendly interface, so we did not have to start from the beginning. By joining forces with the CBTTC and other nonprofits, we have started a platform that will be very unique from the other databases in some meaningful ways.
First, the data will be accessible to researchers who are not within consortium’s boundaries. It will have the size and scale of a government project, but to date, it has been independently funded by the hospitals, nonprofits, and individuals who believe in the vision of the project. This is really an unprecedented level of sharing that signifies a real paradigm shift in the way hospitals and researchers will collaborate in the future.
Second, the data will be linked to patient longitudinal data. This means that we won’t just be looking at a snapshot in time, but researchers can see each patient’s clinical records to know how they responded to a particular treatment. It would also potentially let researchers seek out patients whom they feel would be successful on a particular trial.
Third, unlike most existing databases, it won’t limit what kind of data is stored. Right now, most research is done based on disease type, but this database would allow researchers to focus on a particular mutation, for example, regardless of whether or not that mutation appears in breast cancer or brain cancer. It will also house the entire genome, where many databases currently only store the exome. Having all the raw data at their command will mean that researchers can easily see how conclusions were reached and verify or replicate discoveries.
I believe this database is the gateway to nearly all cancer discoveries that will be made in the next 10-20 years. It won’t help a single research project – it will help all of them. I’m so proud of the visionaries who formed and supported the CBTTC, and I’m truly honored that we are part of the effort that is pushing this forward into unchartered waters. It’s kind of a crazy, weird project, but it is completely feasible. I know it is exactly the kind of thing David would be proud of, too.