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Update from Mesothelioma Information
This latest article from the Program Report of the International Mesothelioma Program explains how historic data is being gathered and used to inform todays research . . .
Retrospective Database Gathers Comprehensive Information to Aid Research
The International Mesothelioma Program has a wide variety of information on more than 2,000 patients with mesothelioma evaluated at Brigham and Women's Hospital and the Dana-Farber Cancer Institute dating back to 1988, long before the program officially began. This wealth of information, when organized and entered into a flexible and user-friendly electronic format, may represent the most comprehensive set of data on mesothelioma patients yet gathered in one place.
The job of pulling it all together falls to Carl Alsup, a clinical research associate and data manager with the IMP. "The database we are creating simply pulls all existing information together and puts it in one place," said Alsup. With the assistance of programmers from the Brigham and Women's Hospital thoracic surgery staff, Alsup is building a database that has 300 data categories thus far, and continues to expand. "Every department that interacts in any way with a mesothelioma patient generates data that we can use," he said, "including obvious areas such as nursing and surgery but also radiology pathology and many, many others. We are simply putting it all in one place."
The database project has been approved by the Institutional Review Board (IRB) at Partners HealthCare, a group that reviews and monitors biomedical research to protect the rights of those participating as research subjects. Access to the database will be restricted so that researchers only see anonymous information that is directly relevant to their work.
Among the categories for eventual input into the Retrospective Comprehensive Mesothelioma Project include demographic information on patients (such as date and place of birth and date of diagnosis), their past medical history (such as a family history of cancer or chronic lung disease), their exposure history (such as job or occupation, known asbestos exposure), information on the patient's surgery (such as date and type of surgery length of time in surgery and in ICU), pathology information (histological type, extent of tumor), and presenting symptoms, types of previous treatments, and many others. The database will be built completely from records, and will not involve contacting patients or families.
The project is expected to take a year or more to bring up to date, with new data entered as new patients come into the program. The task is complicated by the fact that some information is contained in paper records (stored in an off-site warehouse) and some is electronic. "It's important that the information we input is reliable," said Alsup, "so I'll be checking paper against electronic records where there are overlaps or redundancies."
One hope Alsup has for the database project is to "find something significant, when all the data is available for researchers' use. Sometimes, big problems are solved just by people working together. I see this project as a 'binder', bringing researchers and clinicians together. Perhaps there will be a clue in the data, perhaps there will be a 'eureka' moment for a mesothelioma researcher or statistician. The database could be extremely relevant, since there is no cure, and there is so little information of this type available."
Previous update from Mesothelioma Information
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