Until July 8, 2019, The National Institute for Occupational Safety and Health (NIOSH) is asking for the input of people suffering from mesothelioma. If a doctor diagnosed you, you can submit your information to help establish a national mesothelioma registry.
As it stands, physicians report cancer data to the National Cancer Institute (NCI) or Centers for Disease Control and Prevention (CDC). However, these registries only collect information about the potential risk factors and treatment complications. So why develop a mesothelioma registry?
An opportunity to provide input
This potential registry is in its early stages of development. But as a patient, you have the opportunity to provide insight and recommendations on establishing this database. You may also contribute your thoughts to how government agencies could use it to increase knowledge of prevention and treatment options.
If you want to help NIOSH in establishing a registry, you can expect to answer questions such as:
- What would be appropriate ways to quickly enroll mesothelioma patients in a registry following their diagnosis?
- In what ways could a national mesothelioma registry facilitate medical research?
- Which organization is best equipped to manage a national registry?
- How could a registry improve current care for mesothelioma patients?
- What information should this potential registry include?
Mesothelioma control and prevention
A national mesothelioma registry could reduce the delays often found in cancer reporting. And with the invitation to contribute to the process, you can make your voice heard.
Through engaging with researchers, such a registry may provide more options for the care you receive.