A white paper documenting presentations and discussions from the Mesothelioma Patient Registry workshop, which was convened by the Mesothelioma Applied Research Foundation in March of 2019 in Bethesda, MD, was recently published in the American Journal of Industrial Medicine.
The paper, “Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry,” addresses the current state of mesothelioma research from epidemiological and clinical perspectives, and discusses ways to bridge research gaps through the development of a national mesothelioma patient registry. Furthermore, the paper outlines examples of currently existing registries in other diseases and their impact on research for those diseases, as well as currently existing tools in mesothelioma, such as the mesothelioma tissue bank.
In authors’ own words, “The workshop began with formal presentations by subject matter experts, which were followed by a moderated group discussion. Workshop participants reviewed the epidemiology of mesothelioma and clinical and research needs; the strengths and limitations of existing databases, including cancer surveillance programs and the National Mesothelioma Virtual Bank (NMVB); and the lessons learned from a national registry for amyotrophic lateral sclerosis (ALS) and from mesothelioma registries in other countries.”
One of the primary benefits discussed in terms of a Mesothelioma Patient Registry would be the ability to connect patients with available clinical trials. This would present patients with access to novel therapies, while simultaneously helping researchers obtain critically important data to move the field forward.
Another distinct benefit of a patient registry is the support it would provide for research into detection, prevention and treatment of this cancer, all crucial to the task of alleviating the deadly effects of mesothelioma.
A Mesothelioma Patient Registry would be a reliable step toward gaining this understanding.
Click here to read the abstract.
Learn more about the Mesothelioma Patient Registry from our blog.
The Mesothelioma Applied Research Foundation is the only 501(c)(3) nonprofit organization working to eradicate mesothelioma and end this national tragedy. Its programs include the funding of promising and peer-reviewed research, education, support and advocacy. The organization strives to bring together thought-leaders in the field to identify the most direct path to a cure.
