The National Mesothelioma Virtual Bank
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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 blood and tissue 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 must give consent first and are informed of what their blood and tissue will be used for.
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 blood and tissue 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 blood and tissue more usable by researchers.
The foremost service is to provide researchers with the blood and tissue 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 interpretation and consultation. The registry can provide help from expert pathologists in staining samples, interpreting results, scoring, and doing statistical analysis. In addition to providing the samples, the NMVB also offers planning of small and large studies.
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. Having these samples available for researchers is crucial for making advances in both diagnosis and treatment and the NMVB is the only government-funded registry dedicated to mesothelioma. 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 can make progress more quickly because they are also able to better collaborate with other researchers through the database.
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 help them make real advancements in diagnosing and treating mesothelioma and that give real results.
Page Edited by Patient Advocate 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.
