Why the U.S. Needs a Mesothelioma Registry—and What’s at Stake for Patients
Could a National Mesothelioma Registry Save Lives?
In 2019, the Centers for Disease Control and Prevention (CDC) announced it was exploring the creation of a national mesothelioma patient registry. The goal? To track mesothelioma cases nationwide, improve patient outcomes, identify treatment gaps, and give researchers better access to data that could fuel advances in care. Despite the promising potential of such a system, the registry has yet to be implemented, leaving countless patients without the benefits it could provide.
What Is Mesothelioma?
Mesothelioma is a rare but aggressive cancer, primarily affecting the lining of the lungs (pleura) or abdomen (peritoneum). Roughly 3,000 new cases are diagnosed each year in the United States. In most cases, this devastating disease is caused by asbestos exposure, often from jobs in construction, the military, shipyards, industrial sites, or other workplaces where asbestos was widely used. Exposure can also occur secondhand, affecting family members through asbestos fibers brought home on work clothes.
The prognosis is grim: around 80% of mesothelioma cases are deemed incurable, with a median life expectancy of 12 to 24 months following diagnosis. Early detection and access to advanced treatment options can significantly improve a patient’s quality of life and survival time, which is why a registry could be such a vital tool.
How Could a Registry Help?
Health registries are used worldwide to track and improve outcomes for diseases like cancer, diabetes, and rare genetic disorders. Countries including Australia, France, the United Kingdom, Germany, Japan, and South Korea have already established national mesothelioma registries. These systems have enabled earlier diagnoses, expanded access to clinical trials, and better data collection to guide public health decisions.
According to the CDC, a practical U.S. registry would need to:
- Identify and enroll patients as soon as possible after diagnosis
- Provide real-time data for researchers and clinicians
- Facilitate quicker access to clinical trials and cutting-edge therapies
- Improve coordination among public health agencies and treatment centers
However, despite years of discussion and feasibility studies, a U.S.-based mesothelioma registry has yet to be launched.
What’s at Stake?
A national registry could offer immense benefits:
- Early detection systems to identify mesothelioma sooner
- Faster, coordinated responses from health officials and specialists
- Improved access to clinical trials for patients who might otherwise never hear about them
- Data-driven improvements in diagnostic tools and treatment protocols
- Support for long-term tracking of patients to monitor treatment effectiveness and emerging therapies
Without this resource, many patients may miss out on time-sensitive therapies, experimental treatments, or vital support systems.
The Fight Continues
While efforts to create a registry remain stalled, advocacy groups, researchers, and law firms like Madeksho Law continue to fight for mesothelioma patients and their families.
At Madeksho Law, we understand the toll this disease takes. We’ve stood beside families for decades, helping them seek justice and financial compensation for asbestos exposure. Since 1972, we’ve recovered over $400 million for our clients.
If you or a loved one has been diagnosed with mesothelioma, you don’t have to face this battle alone. We’re here to provide compassionate legal guidance and help you access resources and care. All consultations are free and confidential, and there are no fees unless we win your case.
📞 Call 888-910-MESO (6376) or use our contact form to connect with a member of our experienced team.
