The National Cancer Treatment Registry
A Treatment-Specific Cancer Registry May Save Your Life
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Transparency
The National Cancer Treatment 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
The National Cancer Treatment Registry is designed to protect future cancer patients from unnecessary suffering and to honor 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.
Every cancer patient's journey is another step in the pathway to a cure.
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 prototype of the National Cancer Treatment Registry is under development and will be published later this year at www.cancertr.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 related to the National Cancer Treatment Registry’s prototype release or news about the Cancer TOT 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 Capital 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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Existing state cancer registries are not treatment-specific, making them helpful for understanding overall survival likelihood, but useless for patients and families weighing the risks vs. benefits of different treatment protocols.
A publicly-available National Cancer Treatment 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 being collected by state cancer registries.
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Currently, cancer registries do not track detailed safety rates (injuries or deaths during treatment) or side-effect rates (injuries or deaths post-treatment) of individual treatments or treatment protocols.
This 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 kill cancer and how often treatments kill patients.
Those rights are being violated.
It’s easy for hospitals to claim a treatment is effective or that side-effects are rare when hospitals can keep it secret after treatment side-effects result in patients suffering or dying.
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It is a disgrace that future cancer patients’ lives are 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 Cancer TOT Registry 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 and destructive hoarding of invaluable treatment outcome data so it can be utilized by doctors and researchers to cure and improve the quality-of-life of cancer patients.
Today, hospitals’ lack of transparency is endangering cancer patients’ lives.
Forcing hospitals to stop keeping cancer treatment outcomes secret will allow doctors to craft more effective and ethical treatment protocols and remove roadblocks for cancer researchers, while also protecting patients from predatory behavior and minimizing the likelihood of patients suffering.