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The National Mesothelioma Virtual Bank

Finding better treatments for mesothelioma, and even possibly finding a cure for this terrible cancer requires a lot of resources. Developments in diagnosing and treating cancer require researchers, research institutions, pharmaceutical companies, academic researchers, and of course funding. Much of that funding comes through the government, including funding for an important registry of mesothelioma tissue and blood samples. The National Mesothelioma Virtual Bank (NMVB) provides researchers with much-needed samples from consenting patients to be used to develop diagnostic tools and treatments.

What is the NMVB?

The National Mesothelioma Virtual Bank is a facility located at the Departments of Biomedical Informatics, Epidemiology, and Pathology at the University of Pittsburgh that both collects tissue and blood samples from mesothelioma patients and distributes them to researchers to complete studies. The patients from whom the samples originate are informed of what their tissue and blood will be used for and must give consent first.

The NMVB is the largest such registry for mesothelioma samples and it was begun because of the great need to find better ways to diagnose mesothelioma earlier and to treat it more effectively. It is funded through two government agencies: the Centers for Disease Control and Prevention and the National Institute of Occupational Health and Safety. There are other mesothelioma tissue banks in the country, but none that offer samples to so many researchers. Other tissue banks are much more protective of their samples.

Services Offered to Researchers

The main purpose of the NMVB is to collect and distribute mesothelioma tissue and blood samples to help further research. The registry does not simply collect samples and hand them out at random, though. The samples are carefully collected from consenting patients and are stored along with annotated data that can be used by researchers to maintain consistency, including 132 common data elements, including clinical—although not identifying—information about the patients and their outcomes. This annotation that comes with the samples makes the tissue and blood more usable by researchers.

The foremost service is to provide researchers with the tissue and blood samples. Researchers must apply for samples and their studies are judged by a Research Evaluation Panel. The Panel decides if the study is meritorious and if requested samples should be given to a particular research project. There are no limitations on how research is funded; both government and non-government studies are welcome to apply for samples. Students may not apply, but may get access to samples through advising professors.

The NMVB provides the samples researchers need for studies, but also consultation and interpretation. The registry can provide help from expert pathologists in staining samples, interpreting results, scoring, and doing statistical analysis. The NMVB also offers planning of small and large studies in addition to providing the samples.

History and Funding of the NMVB

The NMVB began with a grant from the Centers for Disease Control and Prevention (CDC) along with assistance from the National Institute for Occupational Safety and Health (NIOSH) in 2006. The grant was set for five years, but in 2011 that was renewed for another five-year period. In 2013 researchers were disappointed to find out that, due to budgeting cuts, the CDC and NIOSH would be cutting the annual $1 million to the NMVB. This was a major blow to mesothelioma research.

In 2014 the decision to cut the funding was reversed and the CDC decided to continue the funding that it and NIOSH had originally agreed to provide through 2016. Even better news came in 2016 when the CDC and NIOSH announced that the funding would again be renewed for five years, providing $5.5 million to keep the NMVB going through at least 2021.

The Importance of the NMVB

The importance of having a dedicated mesothelioma tissue repository cannot be understated. The NMVB is the only government-funded registry dedicated to mesothelioma and having these samples available for researchers is crucial for making advances in both diagnosis and treatment. Mesothelioma affects thousands of people every year and most of these people are not diagnosed in the early stages and do not receive a good prognosis. More research is needed to make sure diagnoses can be made earlier and that this disease can be treated more effectively.

Just having funding available for mesothelioma researchers is not enough to develop the innovative treatments that may cure this disease. Researchers also need access to high-quality samples with annotated data. Researchers are able to search the well-documented database for the samples that will help them do their work. They are also able to better collaborate with other researchers through the database, which means that they can make progress more quickly.

The future of mesothelioma research must include resources like those available through the NMVB. As more samples are added to the registry, more researchers are able to conduct studies that give real results and help them make real advancements in diagnosing and treating mesothelioma.

Page Edited by Dave Foster

Dave has been a mesothelioma Patient Advocate for over 10 years. He consistently attends all major national and international mesothelioma meetings. In doing so, he is able to stay on top of the latest treatments, clinical trials, and research results. He also personally meets with mesothelioma patients and their families and connects them with the best medical specialists and legal representatives available. Connect with Patient Advocate Dave Foster

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