The Cancer Treatment Outcome Registry
The CancerTOR protects the rights of cancer treatment consumers.
Our national cancer registry is not treatment-specific.
It publishes overall survival rates and cancer incidence. It does not uniformly track or compare cancer treatments’ side-effect rates or survival rates.
It is useless for patients choosing which treatment to purchase.
Patients cannot weigh the risks of different treatment options while predatory hospitals can exaggerate the benefits of their most profitable treatments.
A Cancer Registry for Cancer Patients is needed.
Cancer treatment consumers have the right to confidently choose treatments that prioritize both survival and quality-of-life before they pay.
The CancerTOR will publish nationwide cancer treatment survival and side-effect rates.
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Transparent
The Cancer Treatment Outcome Registry will organize anonymized survival and side-effect data of FDA-approved cancer treatments into publicly-available and easy-to-understand data visualizations.
This will allow cancer patients and their families to confidently collaborate with their doctors on treatment plans that prioritize both survival and quality of life.
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Inspiration
Every cancer patient's journey is another step in the pathway to a cure.
The CancerTOR will protect future cancer patients from unnecessary suffering while honoring cancer survivors and victims.
Its visual layout and interactive highly-filterable structure is inspired by combining aspects of election data visualizations and The AIDS Memorial Quilt.
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Importance
Future cancer patients’ lives are being needlessly endangered because the overwhelming majority of past cancer patients’ survival and side-effect data is being kept secret by hospitals.
Hospitals have chosen to conceal this data to maximize profits.
You can protect yourself, your family and every future cancer patient in the country by demanding Congress pass The Cancer TOT Act.
What’s Next?
The first CancerTOR prototype is under development and will be published later this year at www.cancertor.org.
Its first iterations will utilize the extremely limited cancer treatment outcome data that is currently available to the public and will gradually expand in scope.
To receive updates about The CancerTOR’s prototype release date or the Cancer Treatment Outcome Transparency Act’s path through Congress, enter your email at the form below or send an email request to updates@cancertotnow.org.
In the meantime, hospitals’ concealment of cancer treatments’ survival and side-effect rates is ongoing. Cancer patients’ consumer right to treatment outcome transparency is being violated every day.
This is a conflict between hospitals and Americans. All 535 members of Congress must choose a side.
It’s fast and easy to make 3 Phone Calls to the Capitol Switchboard at 202-224-3121 to demand your Junior Senator, Senior Senator and Congressperson commit to vote YES for the Cancer TOT Act.
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The national cancer registry data published by the CDC and NIH is broken down by cancer type and. patient demographics but is not treatment-specific.
The data is helpful for patients researching understanding overall survival likelihood. But it is useless for patients and families weighing the risks vs. benefits of different treatment protocols.
A publicly-available Cancer Treatment Outcome Registry, with filters for treatments, cancer type, survival rates, side-effect frequency and patient demographics, will vastly improve on the important but limited data currently available toAmericanswith cancer.
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America’s public national cancer registries do not publish detailed safety rates (injuries or deaths during treatment) or side-effect rates (injuries or deaths post-treatment) of individual treatments or treatment protocols.
This lack of transparency prevents cancer patients and their families from confidently collaborating with their doctors on treatment plans that prioritize both survival and quality of life.
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No federal laws or registries require hospitals to disclose when cancer treatments cause patients to die or suffer catastrophic injuries.
Hospitals are essentially on the honor system.
But the honor system doesn’t work when hospitals hoard invaluable treatment outcome data to compete with each other for patients or are financially motivated to exaggerate the safety benefits of treatments that maximize hospital profits.
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Instead of collaborating with the medical community, hospitals have chosen to silo cancer treatment outcomes internally, keeping life-saving data secret from patients and even from other doctors.
This means if you are diagnosed with cancer, no matter where you seek care, your life will be needlessly endangered because every doctor in the country is in the dark about how often treatment side-effects have killed or harmed patients at other hospitals.
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Cancer patients and their families have the right to know how often treatments actually kill cancer and how often treatment side-effects have harmed other patients before they pay a hospital for a treatment.
That right is being violated.
It’s easy for hospitals to claim a treatment is effective or that side-effects are rare when hospitals can keep the success and side-effect rates of the treatments they sell hidden from their customers.
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Future cancer patients’ lives are being needlessly endangered because the overwhelming majority of past cancer patients’ survival and side-effect data is being kept secret by hospitals.
One of the largest benefits that The CanceTOR will provide is ending the unnecessary suffering of cancer patients caused by doctors and patients being unaware of how many former patients have died or suffered catastrophic side-effects from cancer treatments.
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The Cancer TOT Act will put an end to hospitals' selfish hoarding of life-saving treatment outcome data so it can be utilized by doctors and researchers to develop new therapies and improve the quality-of-life of cancer patients.
Treatment Outcome Transparency will allow doctors to craft more effective and ethical treatment protocols and remove roadblocks for cancer researchers.