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.
Sources:
https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajim.22985
