First of its kind clinical trial – for children with DIPG – to make data available in the cloud

June 10, 2017

At Dragon Master Foundation, we seek to accelerate a cure for cancer by fostering collaboration through data sharing. We are very excited to announce a milestone on that path and who better to tell you about than our president, Amanda Haddock:

“My son, David was funny and weird and delightful in every possible way, and when he got brain cancer we were confident that he would be the outlier, the one to make it. We couldn't imagine a world without his bright light in it. But the grim reality is that they don't have a good treatment for David's type of cancer. He would go from a healthy, happy 16-year-old to gone by the age of 18. And all during his illness the only thing that he asked of us was to keep helping others with cancer,” said Amanda Haddock.

She went on to say, “David chose to be on a clinical trial because he liked the idea of forwarding science, and he wanted to help other people. For those of you who might not be familiar, a clinical trial is the process researchers go through to develop and test possible new treatments. We chose a trial for him based on little data, and even to this day, five years later, we know very little about the outcomes or what happened to the rest of the kids on the trial. Cancer patients (and their families) are told that we are participating in clinical trials to make outcomes better for everyone, but the harsh reality is that trial data isn’t shared for years. I read recently that clinical trial data sometimes isn’t shared for 10-15 years after the trial starts. For children with DIPG brain cancer, who typically die within 9 months, that means the data is published 9 years after the child has died. That’s unacceptable. I agree that the trials are necessary, but to help the most patients the data must be shared.”

But there’s hope, the Children’s Brain Tumor Tissue Consortium has built an infrastructure to help overcome some of the obstacles researchers face in regards to data sharing. While there is still much work to be done, we're honored and thrilled to announce that Dragon Master Foundation has committed to fund the first clinical trial where patient data will be shared in virtual real time. This clinical trial will be conducted by the Pacific Pediatric Neuro Oncology Consortium.

  • For the first time ever, doctors outside a clinical trial will be able to see the data being generated, while the trial is happening.
  • For the first time ever, this data will be used to impact that individual patient’s care.

No longer will we have to rely on one-size-fits-all medicine. These patients will get treatments customized to their specific mutations to the full extent of our medical knowledge. It is truly precision medicine, and it is being enabled first for the most vulnerable of patients, those children with DIPG who so desperately need answers before their time runs out.

In summary, Amanda added, “It's the most tangible thing I can think of that will help cancer patients, and indeed patients with all sorts of medical conditions will benefit from this platform and the research that can be done there. I believe with my whole heart that this is the single largest thing we can do to better our world. It's a perpetual resource that could potentially be used for generations to come. And while it's too late to save David, it's not too late to save so many other people who are facing that same prognosis.”

This is what we at Dragon Master Foundation fund, better data for researchers, better access to that data; so that researchers have more tools at hand and can find a cure to cancer in our lifetime. It wouldn’t be possible without the vision and leadership of the Pacific Pediatric Neuro Oncology Consortium and Children’s Brain Tumor Tissue Consortium who truly put their patients first and lead by example. The work they are doing, and that you are funding, will change the world.

Read the Full Press Release Here

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Help cancer patients and fund this trial to foster collaboration through data sharing.

Dragon Master Foundation is a registered 501(c)(3) charity focused on ending cancer in our lifetime.