Creating an American Mesothelioma Patient Registry

Researchers from the University of Maryland are testing if the United States can create a mesothelioma patient registry.

Other countries like Australia and Italy have created mesothelioma registries. These databases help scientists to understand how common mesothelioma is in their country. It also identifies risk factors for developing the disease.

Tracking the Disease

Mesothelioma is a rare cancer that affects the lining of organs such as the chest, lungs, heart, and abdomen. It is primarily caused by exposure to asbestos.

Asbestos is a fibrous mineral that is used in construction and manufacturing industries. Despite being a rare disease, it has been a big public health issue, especially in the United States. Nearly 3,000 individuals are diagnosed each year.

A mesothelioma patient registry would collect important clinical and exposure data. This would help with tracking the disease across the country and developing prevention strategies.

However, no national mesothelioma registry exists in the United States. This makes it difficult to estimate the disease burden and identify the populations at risk.

Balancing Confidentiality

In a study published in the International Journal of Environmental Research and Public Health, researchers testing a method to collect patient information for a mesothelioma registry.

They developed an online form to collect patient information. It includes questions about their diagnosis, any treatments a patient has received, and disease recurrence.

Collecting patient information using on online form is a possible solution to creating a registry, but there are concerns around confidentiality.

In the United States, employers may be held responsible for their employees’ exposure to asbestos. The registry would need to balance the need for accurate exposure data with the concerns of confidentiality and privacy.

The researchers are hopeful that this first test will lead to the development of a national mesothelioma registry. This will help identify high-risk populations, track disease trends, and evaluate prevention and treatment efforts.

Source

Gaitens JM, Culligan M, Friedberg JS, et al. Laying the Foundation for a Mesothelioma Patient Registry: Development of Data Collection Tools. Int J Environ Res Public Health. 2023;20(6):4950. Published 2023 Mar 11. doi:10.3390/ijerph20064950. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10049120/