Initiative to build an exhaustive, accessible brain tumor database gains buy-in from leading pediatric cancer players.

Brain and central nervous system tumors are the deadliest forms of childhood cancer, and the #1 killer by disease of kids in the U.S. Yet there has never been a single drug developed to stop these malignant tumors from taking children’s lives.

For this reason, Bridge To A Cure Foundation is focused on removing key barriers that stand in the way of curing childhood brain cancer. At this year’s halfway point we want to update our supporters on the tremendous progress being made toward a 50% reduction in deaths due to childhood cancer by 2030.

Our 2021 strategic imperatives include:

• Development of an accessible, robust childhood cancer database;
• Establishment of a clinical trial process/protocol designed for children; and,
• Initiation of new approaches to fund childhood cancer research.

Creating a database that contains everything we need to fight childhood brain cancers is our top priority this year.

We’re driving advancement toward building a database that will contain everything we know and need to develop the treatments that successfully fight brain tumors. To this end, we’re relentlessly pushing forward on these key fronts:

Partnership Funding & Counsel

• Pediatric Cancer Database Commons (PCDC): Bridge to A Cure Foundation granted PCDC $50,000 to accelerate the completion of a childhood brain tumor dictionary that gives the scientists, researchers, and oncologists a single, unified vocabulary worldwide for recording and interpreting data.
• Children’s Brain Tumor Network (CBTN): CBTN is a model for the national childhood cancer database Bridge To A Cure is advocating to make a reality. This repository houses more than 50,000 childhood brain tumor samples, making it the country’s largest of its kind. With these records they compile high quality data and make the information available to any researcher worldwide who requests it. Bridge To A Cure is a member of the CBTN Executive Council, helping to push for institutional buy-in and peer foundation support. In June, Bridge To A Cure Foundation provided a
• St. Baldrick’s Foundation: In June, Bridge To A Cure Founder and President Robert Martin joined the board of directors of St. Baldrick’s Foundation, the largest non-government funder ofchildhood cancer research grants. Bridge To A Cure Foundation pitched in $10,000 toward the more than $310 million St. Baldrick’s has raised to fund 1,620 research grants at more than 379 in 29 countries. It is the goal of Bridge To A Cure to influence this important funding organization to support not only research projects, but also development of a robust, unified database from which all researchers can draw.

Resource Building

As Bridge To A Cure Foundation continues to become more invested with these key partners and the childhood cancer community, it has become imperative to develop relationships to fill resource gaps with best-in-class consultants and professional service providers.

Bridge To A Cure has reached its first such agreement with Kirkland & Ellis, one of the world’s largest law firms, to provide pro bono counsel related to the building of a national childhood cancer database. Discussions are underway to secure proven consultants with strategic planning, database monetization, and communications expertise.

Advocacy

• During Brain Tumor Awareness Month in May, we outlined our plan to improve data collection, storage, and access in collaboration with the groups mentioned above, with the goal of eradicating brain tumors in children.
• Gabriella Miller Kids First 2.0 Act: We’re calling on Congress to pass the Gabriella Miller Kids First 2.0 Act, which would fund childhood cancer and disease research in perpetuity without relying on taxpayer dollars. It’s common-sense legislation that can save thousands of lives. To learn more and add your voice to the call on Congress, click here.
• National Cancer Institute: We continue to push for the National Cancer Institute’s Childhood Cancer Data Initiativeto fund consolidation and expansion of childhood brain tumor data to develop a model that can be used for all childhood cancers.
• Database Consortia: There are currently three consortia that have built their own unique databases for pediatric brain tumors: Children’s Brain Tumor Network, Pediatric Brain Tumor Consortium(PBTC) and Pacific Pediatric Neuro-Oncology Consortium(PNOC). Bridge To A Cure is uniquely positioned to work all three groups to achieve our goal of consolidating these three distinct databases into one.

By harmonizing existing clinical research data and leading international efforts to standardize data collection, we’re breaking down long-standing barriers that have held back advancements in research on rare childhood diseases. We also eliminate waste and duplication as we streamline research toward a cure.

Our commitment to creating new efficiencies in children’s brain tumor research extends to our own operations. Bridge To A Cure Foundation is building relationships to supplement resources in areas where we need support, such as contracting pro bono legal support and strategic planning services.

We need your continued support as we continue to leverage our resources toward a bold goal: to unify and transform the pediatric cancer community to reduce childhood cancer deaths 50% by 2030. Please join our momentum to dismantle the barriers that have left children and their families without hope for too long.

New paper shows how meta-learning may advance childhood cancer research.

Once again, we’re talking cures. May is Brain Tumor Awareness Month, and we are laser-focused on driving the kind of research needed to discover cures for childhood cancers of the brain — because not one single drug has ever been developed for pediatric brain cancer and this is unacceptable.

We shared in our last blog that there are three components to make critical data available:

• Data collection
• Data storage
• Data access

In our April blog post we discussed how the Pediatric Cancer Data Commons is creating the dictionary for childhood brain tumors to aid data collection. This month we want to highlight the work of the Children’s Brain Tumor Network (CBTN) to expand the use of artificial intelligence (AI) and machine learning to fight childhood cancer, greatly accelerating researcher capability to process swaths of data.

CBTN is making headway toward our goal of building a robust database to include everything we know about childhood cancer that can be searched and researched using AI. Bridge To A Cure Foundation sits on the CBTN Executive Council to ensure that the important work of this leading database consortia continues unabated.

As we noted in our January blog, they’re developing a model for attacking brain tumors that can be applied to help all children facing cancer. Because there aren’t enough samples or information at any one hospital for researchers to make meaningful impact on their own, the group pulls together this data globally and makes it available to any researcher who requests it. Currently they supply data in support of 170 projects with leading childhood brain tumor research and treatment centers worldwide.

We’re excited to share this new article in the British Journal of Cancer titled “Meta-learning reduces the amount of data needed to build AI models in Oncology,” which is the first to look at the use of AI using CBTN data.

Meta-learning and its importance to advancing discovery

Meta-learning is described as the use of machine learning algorithms to assist in the training and optimization of other machine learning models. In the AI sense, meta-learning is the ability of an artificially intelligent machine to learn how to carry out various complex tasks, taking the principles it used to learn one task and applying it to other tasks.¹

Transfer learning is a machine learning method in which a model developed for one task is reused as the starting point for a model on a second task. It has been particularly effective in building models for biomedical data.

“Recent genomic studies in oncology demonstrate that meta-learning can facilitate transfer learning and reduce the amount of data that is needed in a target domain by transferring knowledge from abundant genomic data in different source domains enabling the use of AI in data scarce scenarios,” says the article, by Olivier Gevaert.

Related to transfer learning, meta-learning can be thought of as “learning how to learn.” Meta-learning “holds great promise to reduce the amount of biomedical data needed to train predictive models in the target domain of interest,” the new report states. It has been used, for instance, to translate huge amounts of data in a way that can benefit individual patients.

“We show that meta-learning outperforms regular transfer learning and direct learning when predicting survival outcome in a target cancer using data from 33 other cancer sites as source data, reducing the amount of data that is needed in the target domain,” the paper states.

These advances show highly promising applications particularly in the context of rare diseases, such as certain childhood cancer.

One reason new discoveries in childhood cancer have lagged those in adult oncology is the fact that cancers are far more common in adults than in children. As a result, efforts such as CBTN’s face significant challenges in collecting large sets of samples needed for analysis. That is why CBTN’s global and collaborative approach is considered the model for collecting the types and quantity of childhood brain tumor data that can be used by human and artificial intelligence alike to lead to new discoveries toward cures.

“Meta-learning provides opportunities to take advantage of abundant adult data and transfer knowledge to solve questions in pediatric oncology,” the paper states.

This is critical when one considers that brain and central nervous system tumors are the most common cause of death by disease in children from birth to 19 years old in the U.S. and across the globe, affecting 412,000 children and young adults each year.

Much work remains to be done to test meta-learning strategies. Yet our partnership with CBTN is making great strides toward our goal of sparking greater collaboration to accelerate the search for cures.

¹Nelson, Daniel, “What is Meta-Learning?” unite.ai, August 23, 2020

Multiple organizations are working toward the same ends. How can we ensure critical information doesn’t fall through the cracks?

In our January blog, we looked at two organizations that are modeling collaboration in the fight against childhood cancer — but there are dozens of institutions and multiple database consortia involved in researching cures and treatments for these deadly diseases. What obstacles exist that complicate sharing that information, and how can we dismantle those barriers?

Currently there are several childhood cancer consortia collecting data. Top institutions may participate in one or more of these, but data sharing among the consortia is limited and complex. The exception is the Children’s Brain Tumor Network (CBTN) highlighted in our blog, “Modeling Collaboration to Beat Childhood Cancer.” We also commended the collaborative work of the Pediatric Cancer Data Commons. PCDC is not a database and owns no data, but is working to universalize lexicons for cancer so that when data is entered wherever it ends up, the language is consistent and clearly understood.

In addition to CBTN, other organizations collecting data on childhood cancer include the Pediatric Brain Tumor Consortium (PBTC) and Pacific Pediatric Neuro-Oncology Consortium (PNOC). These groups also include key players in the National Cancer Institute’s Childhood Cancer Data Initiative (CCDI), which is working to create universal access to the information that can drive more effective treatments and cures.

As part of our focus on increasing collaboration to save children’s lives, we are approaching these organizations to ask what barriers prevent them from sharing data. These include technological and institutional obstacles that need to be overcome if we are going to realize our vision of creating a truly robust database that contains everything we know about fighting childhood cancer.

For instance, an institution may belong to one or more consortia. They have access to the same dataset, but researchers may be working on different datasets and results that are not shared with the broader childhood cancer research community. If all the research findings for one set of data are not in the same place, there could be a link to cures that no one knows about.

What will it take to find these blind spots? We don’t have the answers yet because we are just starting to explore the gaps and obstacles preventing full collaboration. This is our focus in the first part of 2021.

Technological issues may be solved with technological fixes. For instance, the technology CCDI is developing is not a standard database in which information must be entered in a specific, uniform way. It is more of a blockchain approach where data is in the cloud and technology will allow researchers to access it for analysis. This approach may solve many of the problems inherent in existing siloed databases.

There are 40 institutions signed up with one of the major databases, and 18 of those are involved with more than one. Our challenge is to ensure that all organizations are able to input and access data. To do that we need to discover the technological and institutional/cultural barriers. To break down those barriers, we must recognize that there are real consequences of not collaborating.

There may be data out there today that will help us optimize a current treatment or discover a new cure. It could be sitting in two different databases while no one sees the connection and, as a result, kids are dying. In the high-tech world of pediatric cancer research, keeping that in mind can fuel the willpower we need to overcome institutional and technological barriers, and finally find cures to the diseases that steal young lives.

We are sparking collaboration to solve the immense challenges of  building a comprehensive database to fight childhood cancer.

At Bridge To A Cure Foundation, we sometimes hear praise such as “Congratulations on securing the national childhood cancer database initiative from the NCI!” While we are proud of our work building the groundwork for a National Childhood Cancer Database, we know that this is not the end, but only the beginning.

It’s just not acceptable that childhood cancer remains the number one cause of death by disease for kids, and a source of suffering and worry for so many families. We must keep pushing for the breakthroughs needed to find cures and effective treatments for the 16,000 kids diagnosed annually, and the countless children and families already battling cancer.

We believe building a robust and comprehensive database is the most important thing we can do to speed the delivery of effective treatments, and even cures. Yet there are many obstacles that lie in the way, including the immense challenge of harmonizing data of many different types and from many different sources.

As part of our mission to connect the people and resources needed to find cures, we are teaming up with one of the leading institutions on the Pediatric Cancer Data Commons initiative (PCDC), The Volchenboum Lab at the University of Chicago. They are doing the painstaking work of creating a universally shared language to make data mining viable.

This work is critical to address substantial challenges inherent in creating a national effort to sequence childhood and young adult cancers as outlined in a report of the Board of Scientific Advisors on the Childhood Cancer Data Initiative (CCDI).

CCDI is the government initiative to create a national database. PCDC is a member of the CCDI that is helping to shape how this new database will function effectively. PCDC has been working since 2004 to create lexicons (standardized language) for each form of childhood cancer so that the information in the data is consistent and can be clearly understood. Part of that work requires overcoming logistical and patient privacy complexities in existing datasets.

For example, the Therapeutically Applicable Research to Generate Effective Treatments (TARGET) program applies a comprehensive genomic approach to determine molecular changes that drive childhood cancers. Its goal is to guide development of more effective, less toxic therapies.

The usefulness of any data depends largely on being able to connect it to other sources of information. For instance, genomic data in TARGET is much more useful when connected with clinical information being compiled by our partners at the Pediatric Cancer Data Commons. But connecting them relies on a privacy-preserving linked patient identifier. The NCI-funded Children’s Oncology Group (COG) solved the issue by having the Biopathology Center at Nationwide Children’s Hospital in Columbus, Ohio, replace patient-identifying data with a code that can be publicly displayed while preserving patient privacy.

This is just one example of the challenges of creating a seamless database. There are many other issues relating to policy, regulations and privacy ethics that will have to be addressed, as well as other technological, logistical and human resource hurdles that must be overcome.

These include the need for:

• Computational biologists: Research into promising “targeted therapies” that disable cancer cells in specific ways is fueling a push to understand the basic mechanisms of cancer growth. This is creating massive amounts of data and driving demand for “translational researchers with computational, analytical, and clinical trial expertise who can turn data into concrete knowledge.”
• Visualization tools to extract and exploit information from genetic and molecular profiles and to develop artificial intelligence algorithms that can “understand” and respond to data.
• Data architecture and solutions to adapt to innovations of platforms, structures and tools, and solve problems such as sequentially analyzing and aggregating data on different clouds.
• Global reach. We need to develop integrated analysis with large databases on other platforms in other countries to give researchers into childhood cancers access to all the information they need.

Working with organizations such as The Volchenboum Lab and others, we are working to increase collaboration to address these and other challenges.

September is Childhood Cancer Awareness Month

In dedication of Childhood Cancer Awareness Month, we’re giving you a new opportunity to help support our mission and the fight against childhood cancer.

With a gift of $50 or more to Bridge To A Cure Foundation, you’ll receive the new SuperClara coloring book. Kids color along on an adventure sure to inspire fun and deliver an injection of courage. This uplifting story, based on the book “SuperClara — A Young Girl’s Story of Cancer, Bravery and Courage!,” helps put into perspective the challenges and disappointments we all face.

To donate and receive the new SuperClara coloring book, please click here.

Alternative, less toxic treatments warrant the same level of robust research as pharmaceuticals.

The horrific journey a child and family travel as they navigate cancer cries out for us to explore options beyond the current standard of care. Bridge To A Cure Foundation’s approach does just that by expanding the standard approach to attacking cancer cells in two ways:

1. We advocate expanding the field of attack to also address the four pathways disrupted by the cancer that compromise the body’s natural defense systems:
   • Angiogenesis — Growth of new blood vessels that fuel tumor growth.
   • Apoptosis — Normal cell death which cancer evades.
   • Immunity — The body’s mechanisms to detect and destroy
   • Metabolism — Tumors rewire metabolic processes for continuous growth.
2. We advocate expanding the arsenal of treatments to include alternative medicine and other non-traditional methodologies such as:
   • Traditional Chinese medicine
   • Vitamin therapy
   • Diet and Nutrition

By expanding the field of attack and the arsenal of treatments, the toxicity level of the standard of care approach can be reduced and the prospects for cures increased. We can also make the journey more tolerable and the outcome more hopeful for kids facing cancer.

Until recently, alternative cancer treatments, also known as Complementary and Alternative Medicine (CAM), focused on palliative care — relieving pain and other symptoms to improve quality of life. As research advances, herbal medicines and some other therapies considered “alternative” are showing promise to bolster the health and immunity of patients undergoing radiation and/or chemotherapy. For instance, extract of viscum album (Korean mistletoe) is used to bolster patients’ immune systems that have been compromised by radiation and chemotherapy.

Some CAM treatments also show promise for directly attacking the disease, and for bolstering the body’s four protective processes that can become pathways for cancer.

Attacking the Disease

Pediatric brain tumors have the highest death rate of all childhood cancers, yet are among the most poorly funded when it comes to research. A new study in the United Kingdom is looking at whether cannabidiol (CBD) can help shrink brain tumors in children. Another study is looking at how CBD promotes apoptosis in glioblastoma, the most common primary malignant brain tumor in adults.

“Numerous investigations of the last decade demonstrated cytotoxic effects of cannabinoids, including non-toxic cannabidiol (CBD) without psychogenic activity, on human and mouse glioblastoma cells,” the study states.

Boosting Apoptosis

Herbal medicines that have been used for thousands of years in China are the subject of research into their effect on promoting death of cancer cells and boosting the immune system. These include ginger, (which contains phenolic compounds that have been shown to be toxic to some tumor cells) and resveratrol (a phytoalexin found in grapes that is known to causes apoptosis in some cancers).

Angiogenesis: Cutting Cancer’s Energy Source

Tumors survive and grow through angiogenesis, forming new blood vessels that supply them with oxygen and nutrients. Research shows that many natural health products inhibit angiogenesis. These include ginger, aloe vera, green tea, garlic, grape seed extract, fish oils containing omega-3 fatty acids, resveratrol found in red wine and grapes, and antioxidants such as vitamins A, C, and E.

Metabolism: Slowing Tumor Growth

The ketogenic diet used to control spikes in blood sugar in diabetics also shows promise in inhibiting glucose that fuels growth of certain malignant tumors. In one study, researchers looked at how the diet restricts growth of glioblastoma tumors. In another, they studied effects of the diet on tumor metabolism in two pediatric oncology patients suffering from advanced stage astrocytoma, a type of brain cancer. The results were among the clearest evidence yet that changes in diet and nutrition can help fight cancer.

“Within seven days of initiating the ketogenic diet, blood glucose levels declined to low-normal levels and blood ketones were elevated twentyfold to thirtyfold. Results of PET scans indicated a 21.8% average decrease in glucose uptake at the tumor site in both subjects. One patient exhibited significant clinical improvements in mood and new skill development during the study. She continued the ketogenic diet for an additional twelve months, remaining free of disease progression.

“While this diet does not replace conventional antineoplastic (chemotherapy) treatments, these preliminary results suggest a potential for clinical application which merits further research,” the study says.

Immunotherapy: Bolstering the Body’s Natural Defense System

The body’s natural immune system is often ineffective in fighting off cancer because it does not recognize cancer cells as intruders. Immunotherapy, also known as biological therapy, helps boost the body’s immune response and train it to identify and destroy cancer cells. It includes stem cell transplants that are helping young patients beat neuroblastoma, leukemia, and lymphoma

Immunotherapy can be used as an alternative to chemotherapy and radiation and the damaging long-term side effects they can cause for children suffering from cancer.

“Immunotherapy has already led to major advances in the treatment of many types of cancers, and has been approved as a first line of treatment for several. Its effectiveness has also been proven against types of cancer that have been historically resistant to chemotherapies and radiation treatments,” states an article from Cancer Research Institute.

Adjusting the Sails

The journey children with cancer and their families travel is horrific and the outcomes often discouraging. At Bridge to A Cure Foundation we want to reduce the agony of the journey and increase the probability for happier outcomes. Expanding the field of attack and the arsenal of treatments to reduce toxicity and improve outcomes offers that potential.

There is a famous quote by William A. Ward: “The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.” Rather than continuing the current standard of care and expecting a different outcome, it’s time we take the realist’s approach. At Bridge to A Cure Foundation, we are working to adjust the sails.

Bill Gates + Bridge to a Cure = Path Forward

In Bill Gates’ 2015 TED Talk titled “The next outbreak? We’re not ready,” Bill warned that we were woefully unprepared to deal with the threat of a pandemic. He was right.

In the Bridge to a Cure Foundation’s March 2017 release, we identified the five barriers contributing to the unacceptably slow development of pediatric cancer treatments and cures.  The same is true for infectious diseases.

Globally the coronavirus has infected millions, killed hundreds of thousands, and decimated national economies and the lives of many families. Bottom line: we weren’t prepared. The next time — and there will be a next time — we must be ready. The Path Forward is now and here’s how we should implement it:

• Develop the response plan proposed by Bill Gates and be ready to implement it to identify infectious disease outbreaks early: Gates proposed we look at how the military prepares for war and use that as a model to prepare for the net pandemic. This includes having trained “soldiers” ready to deploy, reserves we can scale up rapidly, and war games-like training simulations. “Those are the kinds of things we need to deal with an epidemic,” Gates said.
• Ensure that the required numbers of trained human resources are prepared to deploy: This includes epidemiologists ready to study the disease and identify how far it has spread, along with medical teams trained and ready to treat patients. Using the Ebola outbreak as an example, Gates noted we were unprepared in these areas and warned: “A large epidemic would require us to have hundreds of thousands of workers.”
• Advance preparedness for clinical research to combat pandemics: Speaking of our lack of preparedness for Ebola, Gates said, “There was no one there to look at treatment approaches. No one to look at the diagnostics. No one to figure out what tools should be used. As an example, we could have taken the blood of survivors, processed it, and put that plasma back in people to protect them. But that was never tried.” In an article titled “Advancing Preparedness for Clinical Research During Infectious Disease Epidemics,” the authors state: “Clinical research is vital for an effective response to infectious disease epidemics. To be viable, preparations must be made in anticipation of infectious disease epidemics and must address barriers to rapid deployment and implementation.”

To meet these challenges we should follow the same approach developed by the Bridge to a Cure Foundation to modernize pediatric cancer research by unleashing resources already available today. Measures we propose include:

• Develop a robust national database for each microbial threat: As the article notes, “In many instances the point at which an epidemic occurs is the only time to gather data and generate new knowledge regarding disease characterization, prevention, and treatment. Experience from previous epidemics highlights how time and again, the research response is delayed and the narrow window of opportunity for enrolling patients during peak epidemic waves is missed.” We must provide a process and framework to capture the hundreds of millions of pages of research, medical files, and the science behind every treatment, drug and alternative medicine so that this data is available in advance of the next pandemic. To learn more, read our Sept. 24, 2019 blog Dying in the Dark and the April 15, 2019 blog Stop Pediatric Cancer Like We do Terrorists.
• Include alternative medicine/treatments: Develop a methodology to evaluate/approve alternative medicines/treatments. To learn more, read our May 29, 2018 blog Breaking Down Barriers, Bridging to A Cure.
• Capitalize on the proven capability of artificial intelligence: Research institutions have been slow to embrace this technology, trusting more in the mind of the researcher alone. Once a robust national infectious disease database is developed, we need to provide the methodologies and tools for researchers to extract meaningful findings. There are computers that can read and review hundreds of millions of scientific pages in seconds. Algorithms can be written to discover, analyze and predict from the data a robust global database would provide. To learn more, read our Feb. 15, 2019 blog Putting the Pieces Together for the Fight Against Cancer.
• Simplify, sensitize, and modernize the clinical trial process by speeding up and reducing complexity. Some ways to do this include pursuing simulated research, balancing life expectancy and quality of life, and including exemptions to allow terminal patients to participate in trials of experimental drugs. To learn more, read our Jan. 31, 2020 blog Solving the Clinical Trial Debacle and the July 25, 2019 blog The National Cancer Institute Knows How to Cure Pediatric Cancer.
• Align and collaborate across institutions and practitioners: Develop a reward and recognition system unique to infectious disease research — one that reinforces a culture of collaboration and spans across and within nations, institutions, governments and sectors. The article referenced above states, “There are multiple challenges to building equitable and mutually supportive partnerships. These include unequal access to funding, academic reward systems that incentivize competition over cooperation, silo-thinking reinforced by (artificial) disciplinary boundaries and commonly held assumptions regarding mutual capacities or needs. Fragmentation and competition among stakeholder groups, research initiatives, and disciplines represent a lost opportunity for shared expertise and learning, and to strengthen global, national, and regional research preparedness.” To learn more, read our Nov. 25, 2019 blog Why Reward Systems are Barriers to Pediatric Research Breakthroughs & How to Fix it.

We are at a moment in history where it is time to acknowledge the flaws in our approach to medical research and treatments, and how we respond to pandemics. Overcoming the barriers identified above is a good place to start. But that alone isn’t enough. We need a holistic strategic approach that engages participation from the medical community; pharmaceutical and technology companies; investment and investor communities; nonprofits/foundations and donors; and military, state, and local officials and government agencies.

It is time to recognize and value institutions and corporations for their contribution to the global good. The mantra of maximizing shareholder value alone is insufficient. Corporations should do more to better mankind — and they should be rewarded for it. In our May 2019 blog, we introduced the Millennial Organization. It revolutionizes the criteria for valuing organizations. The blog provides detailed evidence to support that the time has come for the Millennial Corporation — the organization whose stock value reflects not only sustainable profit growth but also its contributions to improving the human condition. Now is the time for the investment community and pharmaceutical industry to redefine the matrices for valuing this industry. Investing in childhood cancer would be a good place to start. To learn more, read our May 28, 2019 blog The Cure to Pediatric Cancer is at Our Fingertips.

Building a robust national database is crucial to energize breakthroughs
against cancer and other childhood afflictions

Last month President Donald Trump surprised advocates for cancer patients by proposing to spend $500 million over 10 years on pediatric cancer research, starting in 2020 with a focus on sharing patient data. Bridge to a Cure wants to make sure that happens.

In his State of the Union speech, Trump honored a “very brave” guest sitting with First Lady Melania Trump: 10-year-old brain cancer survivor Grace Eline, who raised money for pediatric cancer research before developing the disease herself.

Grace is not alone. In America, 30 million children struggle every day with the challenges of a debilitating chronic disease or disorder. These include 13 million children battling a serious disease plus 17 million struggling with psychological disorders.

One of those children might be your own child, grandchild, niece or nephew. Yet as anyone who has stood beside one of these helpless children knows, the medical results they are counting on are often disappointing. We are not seeing the breakthroughs we need to help these 30 million children. We shouldn’t be surprised. Without a robust national database, the information researchers need is limited and insufficient to deliver the breakthroughs millions of children are counting on.

The President pointed out that “many childhood cancers have not seen new therapies in decades.” Boosting funding by $50 million a year would equal an 11% increase over the $462 million that the National Cancer Institute (NCI) and other National Institutes of Health (NIH) institutes expect to spend this year on pediatric cancer, according to Science Magazine.

Sharing patient data will be a major initial thrust of the new funding according to NCI Director Ned Sharpless. Adding $50 million in the coming fiscal year “would afford a unique opportunity to leverage the power of existing data and develop new knowledge that will drive discovery and development of new approaches to treat childhood cancers,” the agency says.

Some critics worry that focusing on data will come at the expense of other parts of NCI’s budget. But Sharpless says he is “100% convinced that the area of artificial intelligence and machine learning will have a huge impact on cancer research and cancer care.”

Sharpless is former director of the Lineberger Comprehensive Cancer Center at the University of North Carolina (UNC) in Chapel Hill. There his team used IBM’s Watson supercomputer to organize data on new therapies to help determine what drug to give patients based on tumor mutations. He compared the Big Data approach to “a million paralegals that are really, really fast.”

“Having med students reading charts and abstracting them is just too slow, and so these tools that use natural language processing to extract the records are very useful,” he said. “That’s going to get us a million patients that are clinically annotated and aggregated with genomic data sets. That will allow us to do the kinds of things that we really need to do.”

About a year ago, I met with Sharpless for a couple of hours to discuss our mission at Bridge to a Cure Foundation. He was very supportive of our focus, and we support his proposal to boost patient data as a first step toward building a robust database for pediatric diseases and disorders.

We need to establish a process and framework to capture and analyze hundreds of millions of pages of research, medical files, information on traditional and alternative treatments, and other data in one place. This must be our primary thrust if we are to find effective treatments and cures for diseases that strike both children and adults.

Surprisingly, our nation does not yet have a robust database for pediatric disease and disorders. This is one of the main reasons we started Bridge to a Cure. Our mission is to increase the pace and success of pediatric research by unlocking resources already available today.

It will be up to Congress to decide which of President Trump’s priorities to fund in the federal budget. It is critical that funding for increased research into pediatric disease remains a budget priority with sharing data the primary focus.

Building a robust national database will require us to share ideas, research, and medical files. It’s the only solution that can tie together all that we know about diseases and disorders, while illuminating knowledge gaps we still need to fill. Building such a database on pediatric cancers can serve as a model toward using this approach to fight all pediatric diseases and disorders.

Together, we can make a difference in the lives of the 30 million children struggling every day with the challenges of debilitating chronic diseases and disorders. We need to give these kids hope and the will to chase their dreams.

The resources to build a robust national database are available today. With your help and support, we can make this happen. Join the crusade to improve pediatric research at www.BridgeToACure.org by pledging your support. While donations are appreciated, you can also make a difference simply by sharing your name here.

Help spread the word! Posts you may copy and paste into your social media accounts:

We support the #PresidentTrump proposal to spend $500 million on #pediatriccancer research. #childhoodcancer #childhoodcancerawareness #cancersucks

We must build a robust database for pediatric diseases and disorders. #pediatricresearch #childhoodcancerawareness

We are not seeing the #childhoodcancer research breakthroughs we need to help 30 million children with pediatric diseases and disorders. #cancersucks

Surprisingly, the #UnitedStates doesn’t have a robust database for pediatric disease and disorders. #pediatricresearch #pediatriccancer

Building a robust national database for pediatric disease and disorders requires sharing ideas, research and medical files. #pediatricresearch #pediatriccancer

Join the crusade to improve #pediatricresearch at www.bridgetoacure.org.

Private enterprise, medicine, science, and government are all moving in the right direction.

When will they start pulling together?

The Bridge to a Cure Foundation exists to tear down the deadly barriers that impede the timely development of effective treatments and cures for cancer. Number one on that list of barriers is the absence of a robust national database combining everything we know about fighting cancer – research, patient information, epidemiology, and hard data on holistic and alternative as well as conventional treatments.

Such a database is needed to address the second and third on our list of deadly barriers in the search for effective treatments and cures: the inability of even the most brilliant scientific minds to digest the millions of pages of research and medical files used to assess and treat patients; and inadequate collaboration.

While our dream of a single national database has not yet been fulfilled, there are many players working to leverage big data in the fight against cancer and other diseases now considered terminal.

One of the most notable is the CancerLinQ^® initiative of the American Society for Clinical Oncology. This is an effort to collate data from every cancer patient in the US and make it available for analysis in the hope that it will reveal patterns that lead to new insights, big data expert Bernard Marr writes in Forbes. In “How Big Data Is Transforming The Fight Against Cancer,” he calls the search for a cure for cancer “the Holy Grail of medicine.

“Almost everyone will be affected at some point in their lives, either personally or by proxy through a loved one. So it’s no surprise that Big Data is being put to use in many ways to aid the task of improving care, identifying risks and hopefully eventually producing cures.”

Marr also mentions what I consider another very promising initiative: how 14 cancer institutes in the US and Canada are using IBM’s Watson’s computer system to match patients with the treatments most likely to help them. Watson is being used to analyze thousands of mutations to identify which is driving each tumor and what drug is most effective, choosing therapies based on a tumor’s genetic fingerprints. Yet Watson has trouble identifying “actionable targets” in cancers with many mutations.

Cancer researchers worldwide understand the importance of genetic sequencing and analysis. And they are starting to understand how artificial intelligence can play an important role in the fight against the disease – or diseases, as Beatriz Guillén correctly points out in an article in BBVA OpenMind.

“One of the most important discoveries that the extensive decades-long research into cancer has brought us is that it is not just one disease, but rather many different diseases,” she writes. “There is no single liver cancer, or a single type of pancreatic tumor. The origin of the cancer in each patient has its own causes.”

BBVA stands for Banco Bilbao Vizcaya Argentaria, S.A., a multinational Spanish banking group and the second largest bank in Spain. The vision that Guillén outlines is remarkably similar to what we are working toward at Bridge to a Cure: “to create a huge digital medical data library, a kind of Big Data of Medicine which respects the privacy of the patient but accelerates diagnosis and treatment.”

Software and pharmaceutical companies are among private entities working to harness the power of big data to help manage chronic diseases that account for 86 percent of healthcare spending. These include arthritis, cardiovascular diseases, epilepsy, and diabetes, as well as cancer.

“Even after the widespread adoption of various electronic health record systems, most providers can’t get EHRs to interoperate or exchange significant health information,” Rick Altinger, CEO of software company Glooko, wrote last year in MedCityNews. “The ability to gather enough quality data for effective analytics hampers the potential to improve healthcare productivity and chronic care outcomes.”

Altinger suggests we need to “turn healthcare Big Data into an actionable asset rather than a siloed bureaucratic nightmare.”

This precisely is our challenge to government and the medical and scientific communities. How can we best combine all the work being done on all of these fronts to give us the best shot at beating cancer?

Cancer touches all of our lives at some point. Childhood cancers are particularly cruel in how they steal away young lives and leave families grieving for a future that might have been. We owe it to everyone who has fought this fight to tear down all the walls that are preventing us from finding effective treatments and even cures for cancer.

Remember the “Cancer Moonshot” that former Vice President Joe Biden launched? It’s now called “Cancer Breakthroughs 2020,” and aims to find vaccine-based immunotherapies against cancer. More than 50 leading cancer doctors recently released a report recommending 13 priority areas to speed up the process.

The priorities include worthy goals such as “a sped-up drug discovery process” including “expansion of the cancer center drug pipeline and reduced development costs through partnerships,” and “expanded patient access to new drugs through larger clinical trials, including increased participation of pediatric and minority patients.” Good ideas, but they are unlikely to succeed unless we change our whole approach to fighting cancer.

As part of the “moonshot,” Congress appropriated $1.8 billion last year to fund cancer research over the next seven years. No one has voiced opposition because the cause is noble. But it is will be waste of money unless we take action to tear down the barriers that have so far kept us from conquering cancer.

Think about it: December 23 will mark 46 years since President Richard Nixon signed the National Cancer Act of 1971, launching the so-called “War on Cancer.” Including the $1.6 billion the federal government earmarked at that time, the National Cancer Institute has spent an estimated $115 billion on research and development of treatments since then. Yet almost 40 percent of us will be diagnosed with cancer at some point during our lives, and of that 40 percent, 36 percent will die within five years.

Why does curing cancer continue to elude our best medical minds? Does anyone think this “moonshot” will fare any better?

The search for effective treatments and cures will take forever if we don’t fundamentally change the way we are doing things. For instance, continuing to rely heavily on clinical trials is folly because of the snail’s pace of this process. We need to take action.

We can start by tearing down these 5 deadly barriers impeding the timely development of cancer treatments and cures:

1. Absence of a robust national database. Building such a database must be our first priority.

2. Inability of even the most brilliant scientific mind to digest the millions of pages of research and medical files from which to assess and treat patients.

3. Inadequate collaboration within the scientific community.

4. Clinical trials are costly, slow and complex.

5. Opposition to alternative treatments.

Tearing down these barriers is now our primary mission at Bridge to a Cure with a special focus on pediatric cancers. It’s time to shift the mindset and culture that have kept us from beating cancer. It’s time for academia and government to adopt the practices that have made corporate America successful – practices that I know well from my work turning around companies and divisions.

In the days ahead we will delve into each of the barriers, and what we must do to overcome them. Until we meet the challenge, medical science will be “moonstruck” in its search for cures.