Hearing that your little one has cancer is devastating.
But the heartbreak doesn’t end there. For thousands, a family’s journey through childhood cancer also includes the shock in discovering that our healthcare system is failing — despite the best efforts of caring, talented, and dedicated armies of medical practitioners.
Data is a crucial component to discovery. Making millions of data points readily available to cancer researchers and oncologists will propel childhood cancer cures that have eluded discovery.
- Surprisingly, the U.S. has never had a robust database for even the most deadly forms of childhood cancer. As a result, the great minds that children with cancer depend upon don’t have access to all data they require and are often constrained to their institution’s own research data, patient records, and published materials. But, no one institution houses enough relevant data to move the needle on cures for the deadliest forms of the disease.
- Even if all of this information was available, the volume of data would be overwhelming and unmanageable unless it was harmonized so that data from different sources, languages, and formats can be useful for research.
- The database must be complete and without bias, open to all scientists and researchers. It should include everything known about cancer, the medical files of every child treated, the science for every treatment, and more. We’ve put the full weight of our foundation behind the Children’s Brain Tumor Network (CBTN). CBTN has been identified by the National Institute of Health (NIH) as the model for open science in data-driven discovery. Read more about how, together, we are changing the landscape for childhood cancer research in our blog article Learn How Bridge To A Cure Is Accelerating Treatments – With Childhood Brain Tumor Network!
- We need methodologies, data harmonization, and tools for researchers to extract meaningful findings, plus algorithms to analyze, discover, and predict from the vast amount of data once available in the database. For details, see Putting the Pieces Together for the Fight Against Cancer.
02. Advance Personalized Medicine For Every Child
Applying big data and machine learning ensures every child with cancer receives the right diagnosis and the most effective, personalized care.
- The clinical trial process was created for adults — not children. As a result, half of the medicines used to treat children have been extrapolated from adult data and do not have adequate randomized control trial data to support safe and effective dosing. These toxic treatments often cause irreparable damage to young bodies and minds.
- We must move from a one-size-fits-all treatment to a tailored, personalized approach for treating childhood cancer. Treatments can now be developed that are more effective and less harmful for our children. Read more at Personalized Medicine Holds Promise of Curing Brain Tumors – One Child At A Time.
- There needs to be protocol tailored to the physiology and chemistry of children that entails demanding performance standards which are sensitive to the journey’s quality of life. Uncover more by reading The Childhood Cancer Clinical Trial Debacle and Solving the Clinical Trial Debacle.
03. Require Open Science For Research Funding
As a society, we have a moral obligation to care for and protect the vulnerable and dependent. The race for cures should be fought against the disease, not against each other.
- Priorities for government funding and pharmaceutical investing are determined by the biggest bang for the buck, period. Children (ages 0-19) represent only 1% of new cases each year, or 4% if based on the life-years potentially saved.
- Those who receive donor- or publicly-funded grants are most often under no obligation to share their research for the good of our kids. We should insist that the crucial, life-saving data generated from this investment be shared – openly, in an accessible format, and without embargo.
- We need a national healthcare strategy that is sensitive, pragmatic, and sustainable. In our view, failing to require data sharing from those who take public funds for childhood cancer research is unacceptable.
- We’re putting out the call to the legislature, government funding agencies, and granting foundations to require data sharing for all childhood cancer research projects so that we can pool resources and accelerate discovery toward cures.
- Let the pharmaceutical companies focus on adults, where the investment returns are. The National Cancer Institute (NCI) should deploy funds to where the money is not – childhood cancer research.