TABLE 2.

Summary of approach to establishing a National Mesothelioma Registry

Facilitate rapid collection and consolidation of case data by central cancer registries

Provide funding and technical support to cancer registries and state health departments to facilitate rapid case ascertainment, consolidation of data, and rapid reporting to the National Mesothelioma Registry

Facilitate automated reporting of cases from pathology laboratories to central cancer registries using software tools such as ePath or the Text Information Extraction System (TIES)

Support use of electronic health records (EHRs) to prompt and facilitate e-reporting of cases to cancer registries and to augment available information through structured data capture (clinical, demographic, etc)

Promote rapid, direct reporting by patients and healthcare providers to cancer registries as soon as possible after mesothelioma diagnosis. Target populations at high risk for mesothelioma, and providers likely to encounter patients with the disease

Rapidly receive data from central cancer registries and use it to improve clinical care and support multidisciplinary research

Work with stakeholders and experts to assure that operations and services are accepted and meet users’ need

Develop methods for securely receiving and storing identifiable data from cancer registries or receiving deidentified data and working through registries to provide services requiring identified data

Develop standardized methods for collecting additional high-quality data about cases needed by researchers (such as detailed information about exposures, clinical presentation, outcomes of treatments) by linking to available data sets or obtaining data directly from patients and families

Develop services for registrants such as informational materials and assistance with accessing state-of-the-art care

Develop and implement services allowing research teams to contact appropriate patients nationally and consent them for trials and clinical research

Aggregate data for use in basic, epidemiological, and clinical and translational research and act as an “honest broker” to provide researchers with access to accurate, deidentified data

Collaborate with National Mesothelioma Virtual Bank to facilitate collection and banking of biospecimens needed for research

Note: Two main areas of activity are shown. One is to work with central cancer registries and states to facilitate automated and electronic reporting and to promote direct reporting by patients and providers. Funding and technical support is needed to facilitate rapid case reporting to registries and to enable the registries to rapidly consolidate data and transmit it to a National Mesothelioma Registry. The second area of activity is for the National Mesothelioma Registry to securely receive and store the data, enhance it by linkage to other data sets and direct data collection, and use it to provide useful services to patients, researchers, and others.