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Conor’s Story: A Toddler’s Cancer Inspires a Powerful Patient Empowerment Innovation

Patients Speak Biotech

The daunting challenges Beth Anne Baber and her husband faced when their son Conor was diagnosed with cancer in 2005 spurred the oncology researcher to launch a technology start-up called STORM Real World Health to give other patients the tools and data they need to make more informed treatment decisions.

Conor was an extremely happy, energetic 16-month-old when he was diagnosed with an advanced case of a life-threatening cancer in 2005. Both of his parents, Beth Anne Baber and her husband Nick, were cancer researchers, so they understood immediately what was at stake. Despite their expertise and contacts, they struggled to choose the best treatment options from among the small number available. They were hindered by uncertainty about the exact nature of Conor’s illness and a lack of information about the outcomes of available therapies. They also learned first-hand how drug companies’ unwillingness to invest in research into cures for rare cancers limits patients’ treatment options.

Today, Conor is an active, healthy cancer survivor, a happy teenager who loves to skateboard and mountain bike. His treatments, though severe, left no lasting side effects. While their choices were successful, Beth Anne and Nick’s treatment decisions could have been made with greater confidence and less guesswork if they and their doctors had more information about other patients’ experiences. It was this insight that would eventually spur Beth Anne to work to empower future patients in this way.

This all began one day nearly 14 years ago, when Conor seemed unwell at day care. Beth Anne and her pediatrician initially thought he might have pneumonia, since he had a cough and a fever. But a scan and other tests showed a large mass in his chest that his doctor said was probably a neuroblastoma. It was too large and close to his vital organs to be removed by surgery. After some disagreement over its exact pathology, doctors decided it was a high-risk neuroblastoma, and that chemotherapy was the best option. Of the two chemo options available – standard high dose treatment or high dose as a precursor to a stem cell transplant – his parents chose the first on the basis of quality of life concerns.

“While we were contemplating treatment options for Conor, I was desperately seeking answers to three questions,” Beth Anne recalls. “Are there children like him with the same cancer type and cancer profile? How were they treated? And, what were there outcomes? The answers to these three questions would have given us the information we needed to make treatment decisions for Conor with confidence.” She says other families that have heard Conor’s story reach out to her looking for answers to these same questions.

After the third round of chemo, the tumor had shrunk enough to be removed surgically. After seven rounds, doctors declared him NED (no evidence of disease), a true miracle. As an added bonus, the treatment did not cause apparent hearing loss or detectable damage to his heart and kidneys, which were potential side effects of the treatment. By Conor’s second birthday, he began to show signs of a full recovery: his hair began to grow back, energy levels returned to normal, his immune system slowly built back up and stabilized, and he no longer needed blood transfusions. A relatively “normal” life gradually returned. After another round of treatment with another drug meant to destroy any remaining cancer cells, Conor and his parents were able to get on with their lives.

After Conor completed his treatment, Beth Anne began to investigate other pediatric cancers and their treatments. She realized that most pediatric cancers are being treated with the same chemotherapy drugs that have been around for many years. “The only difference is that the regimens have become more intense and their success in increasing survival has plateaued at the expense of inducing severe long-term side effects,” she explains. “Very few new chemical agents are currently in development for childhood cancers simply because the market size is too small to warrant spending millions of dollars for development and clinical trials.”

Working closely with concerned groups in sectors including academia, industry, non-profits, government and patient advocacy groups, Beth Anne realized one of the most significant barriers that prevent the medical industry from translating their promising discoveries into new treatments and diagnostics for pediatric cancers is access to tumor samples and associated patient outcome data.

No clearinghouse for this sort of information existed, so Beth Anne decided to create one. In 2012, she lobbied Congress to facilitate greater access to records of patient treatment data and outcomes, and proposed a platform, Standardized Tumor Outcome Repository Management (STORM), to facilitate this. To this end, she co-founded a San Diego-based start-up called STORM Real World Health to gather and analyze the information. “At that time, electronic health records were not prevalent, the technology was not quite ready, patient engagement was much lower than it is today, and patients did not have the right to authorize their health data to a third party,” she says. “Since then, I and others advocated relentlessly for funding research initiatives for pediatric, adolescent and young adults cancers and for changes that would lower these barriers or make them obsolete.”

Through government relations and ties to the medical establishment, the drug industry, research institutes and academia, STORM Real World Health hopes to build a community of patients and professionals who contribute their health data to help others. Beth Anne says, “Think of STORM as a navigation application for your health.” The aggregation of this data along with a statistical-based, outcome algorithm will provide patients answers they need to help them make treatments decisions that are best for them.

“Our vision is better patient outcomes by helping patients navigate their health care within a community of patients whose contributed health data informs them of the best treatment options and, also accelerate precision medicine and fast track drug development,” Beth Anne says. If STORM succeeds, patients will be far better able to make informed decisions, and all the pain and worry that Conor and his parents experienced during his second year of life will have spurred an innovation with far reaching, positive effects for patients.

Click HERE for more information on STORM.

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