A distinguished team of scientists are calling for a national mesothelioma registry they say could improve outcomes. If the registry collects and provides the right information, they say it could even help prevent future mesothelioma cases.
Experts from the CDC, the National Institute for Occupational Safety and Health (NIOSH), and several top US cancer centers participated in a workshop on the topic. The Mesothelioma Applied Research Foundation convened the workshop.
The group says existing tumor registries at some cancer centers are not as useful as a national mesothelioma registry. But coordinating a national registry will require government support.
What is a Mesothelioma Registry?
Malignant mesothelioma is a rare cancer which makes it hard to study. A national mesothelioma registry is a centralized place to hold patient information. It would house details about tumors, diagnosis, symptoms, and exposure history. Researchers and doctors could use the information to improve mesothelioma care.
Some cancer centers have started similar databases. The National Mesothelioma Virtual Bank at the Icahn School of Medicine at Mount Sinai is an example. It collects and saves mesothelioma tumor samples for research. But the workshop participants say databases like that one have limits.
“Existing databases…are limited by factors such as delays in reporting, de-identification, and lack of exposure information critical to understanding as yet unrecognized causes of disease.” the authors write.
An effective mesothelioma registry will have to balance patients’ need for privacy with scientists’ need for data.
Next Steps for National Data Collection
One of the challenges of a national mesothelioma registry is how to efficiently collect the right data.
Malignant mesothelioma cases occur at centers around the country. Mesothelioma doctors would need to know about the registry. Then they would need to know which patients to include, what data to collect, and where to send it.
Other challenges come after the registry is up and running. How will the data help mesothelioma patients connect with the best treatments and clinical trials? And how will researchers access it for studies?
The workshop team concluded that it is best to start small. They called for pilot initiatives to work on logistics of data collection. And they say help is going to have to come from the top.
“Ultimately, federal coordination and funding will be critical to the success of a national mesothelioma registry in improving mesothelioma outcomes and preventing future cases of this devastating disease,” concludes the report.
Cummings, KJ, “Workshop summary: Potential usefulness and feasibility of a US national mesothelioma registry”, November 19, 2019, American Journal of Industrial Medicine, Epub ahead of print, https://onlinelibrary.wiley.com/doi/abs/10.1002/ajim.23062