Key Takeaways
- The United States does not have a National Mesothelioma Registry — unlike countries such as Italy, which has maintained one since 1993 (codified into law in 2002). The databases that do exist in the U.S. are limited by reporting delays and incomplete exposure data.
- In March 2019, the Mesothelioma Applied Research Foundation held a workshop identifying three priorities for a U.S. registry: connecting patients with high-quality care after diagnosis, giving patients access to clinical trials, and making data available to researchers faster.
- With over 3,000 new mesothelioma cases per year in the U.S. and a median survival of less than one year, better data collection and research infrastructure are urgently needed.
- Only 5% of cancer patients participate in clinical trials — often due to mistrust, lack of awareness, or difficulty finding relevant trials. A registry could directly connect patients with investigators and trial opportunities.
- A national registry would help patients find specialized mesothelioma treatment centers, improve early detection efforts, support research into better treatment options, and ultimately extend both survival rates and quality of life.
Since mesothelioma is such a rare form of cancer, it is difficult to get the proper statistics on the number of cases there are per year.
There are other countries, including Italy, that have a National Registry for mesothelioma, and it would be useful for the United States to have one as well, as they do not already. In March of 2019, the Mesothelioma Applied Research Foundation gathered for a workshop on the benefit of a national mesothelioma registry in the US. The main priorities for a national registry that were discussed during the workshop were to connect patients with high quality care after diagnosis as well as giving patients the ability to participate in clinical trials and making data available to researchers as quickly as is feasible.
The databases for mesothelioma in the US that currently exist are limited in their information for a variety of factors, such as delays in reporting and not having enough information on the type of exposure or source of exposure.
Clinical Trials
Although rare, there are still over 3,000 new cases of mesothelioma each year in the US, with a poor prognosis, so it is important that there is proper information being recorded regarding these cases to help foster research and advances in treatment. There are clinical trials available, however there is a lack of participation in these clinical trials. Only 5% of cancer patients in general participate in clinical trials. It seems that the lack of participation is caused by mistrust in the clinical trials or lack of knowledge of what exactly the trials are about. Another difficulty for mesothelioma patients when it comes to joining clinical trials is that a lot of trials are early phase trials of targeted therapies instead of multimodality treatments. Many mesothelioma patients may not be aware of certain trials until it is further along in their treatment.
The median survival rate for mesothelioma is not even a year and for decades there has not been much of an improved prognosis. This calls for more studying and research to determine the best possible treatment modalities.
Many countries have already established registries for mesothelioma. As previously mentioned, Italy has a National Mesothelioma Register, which started in 1993 and was codified into law in 2002. It includes a network of regional registries that combine to include almost the whole country. The information about exposure is gathered either through the patient or through interviews with next-of-kin.
Goal of National Mesothelioma Registry
The goal of a National Mesothelioma Registry in the US would be to make clinical outcomes better by extending survival rate and also extending a high quality of life. Having a national registry would enable mesothelioma patients to have access to hospitals that treat mesothelioma as well as clinical trial investigators. For a registry to work well, there may need to be outreach to providers and laboratories, utilization of national healthcare databases, “collaborations with state health departments and cancer registries, partnerships with advocacy groups and labor unions for outreach to groups at high risk for mesothelioma, and patient self-referral via a web-based portal.”
A National Mesothelioma Registry would help with advances in research and with finding ways to detect mesothelioma early and in some cases prevent the disease altogether.
If you or a loved one has been diagnosed with mesothelioma or another asbestos-related disease, please call (800) 505-6000 or fill out our form to find out how we can help you and your family get the compensation you deserve.
Frequently Asked Questions
What is a National Mesothelioma Registry?
A National Mesothelioma Registry would be a centralized database that collects and tracks information about every mesothelioma diagnosis in the United States — including patient demographics, type of mesothelioma, exposure history, treatments used, and outcomes. The goal is to create a comprehensive resource that connects patients with specialized care and clinical trials while providing researchers with the data they need to improve treatment and detection.
Does the United States currently have a National Mesothelioma Registry?
No. The U.S. does not currently have a dedicated national registry for mesothelioma. Existing databases are limited by delays in reporting, incomplete information about exposure sources and types, and fragmented data collection across states. Other countries — most notably Italy, which established its National Mesothelioma Register in 1993 — have demonstrated the value of centralized tracking through a network of regional registries that cover nearly the entire country.
Why is a National Mesothelioma Registry needed?
Because mesothelioma is rare — affecting about 3,000 people per year in the U.S. — data about the disease is fragmented and difficult to study at scale. A national registry would address several critical gaps:
- Connecting patients with specialized care immediately after diagnosis
- Increasing clinical trial participation — currently only 5% of cancer patients take part in trials, partly due to lack of awareness
- Providing researchers with faster access to comprehensive, up-to-date data
- Improving early detection by identifying exposure patterns and high-risk populations
The median survival rate for mesothelioma has remained under one year for decades, underscoring the need for better research infrastructure.
Why don’t more mesothelioma patients participate in clinical trials?
Several barriers prevent mesothelioma patients from joining clinical trials. These include mistrust of the trial process, lack of awareness that relevant trials exist, difficulty finding trials that match their specific diagnosis and treatment stage, and the fact that many available trials are early-phase studies of targeted therapies rather than multimodality treatments. By the time some patients learn about a relevant trial, their disease may have progressed beyond eligibility. A national registry could help solve this by proactively connecting newly diagnosed patients with investigators and open trials.
Which countries already have a mesothelioma registry?
Several countries have established mesothelioma registries. The most notable is Italy’s National Mesothelioma Register, which was started in 1993 and codified into law in 2002. Italy’s registry operates through a network of regional registries that together cover nearly the entire country. Exposure information is gathered either directly from the patient or through interviews with family members. Other countries have implemented similar tracking systems as part of broader occupational health or cancer surveillance programs.
How would a registry help mesothelioma patients in Pennsylvania?
Pennsylvania has a significant history of asbestos exposure — from the shipyards in Philadelphia to the steel mills in Pittsburgh and Bethlehem, the asbestos manufacturing legacy in Ambler, and power plants and factories across the state. A national registry would help connect Pennsylvania patients with specialized treatment centers like Fox Chase Cancer Center and Penn Medicine, match them with relevant clinical trials, and ensure their cases contribute to research that could improve outcomes for future patients. It would also help identify geographic clusters of cases linked to specific Pennsylvania job sites and industries.
What should I do if I’ve been diagnosed with mesothelioma?
If you or a loved one has been diagnosed with mesothelioma or another asbestos-related disease, understanding your treatment options and legal rights is an important first step. Call (800) 505-6000 or fill out our contact form to find out how we can help you and your family.
