Data and Dementia

As any fan of the late Berton Roueché knows, data is the key to solving medical mysteries. In his 50-year career at The New Yorker, medical writer Roueché chronicled the detective work of epidemiologists as they hunted down the data crucial for understanding and treating all manner of maladies. Even now, some of the medical mysteries he covered are said to inspire the writers of the popular TV series, House.

As true today as when Roueché wrote his first medical stories in the 1940s, data is the currency of diagnosis. Symptoms, histories, lab tests—all are data, and out of this collection emerges a diagnosis. Usually, but not always. Some diseases defy diagnosis, and of these, Alzheimer’s disease ranks among the worst. This incurable disease robs its victims of their cognitive functions, eventually stripping them of everything that made them who they were. Anyone who’s ever watched this merciless process in a friend or loved one knows the utter sadness of Alzheimer’s. Compounding the tragedy is the inability to diagnose the condition while the patient is alive. Only post-mortem biopsy of brain tissues can reveal the tangled plaques that are the definitive marker of the disease.

Today, however, rapid data gathering and sharing is giving new hope to Alzheimer’s researchers. As reported in the National Science Foundation Office of Cyberinfrastructure (NSF-OCI) Task Force on Data and Visualization, the Alzheimer’s Disease Neuroimaging Initiative (ADNI) is compiling and disseminating data from a variety of diagnostic approaches, working to identify biomarkers that could lead to early diagnosis—and with it, a hope for effective treatments.

A partnership of the private sector and the National Institutes of Health, ADNI has taken a multi-pronged approach, combining data from numerous groups of volunteer subjects and array of diagnostic methods: spinal fluid analysis, MRI images, and PET scans among them. The data, which comes from 800 volunteers spread across 14 different medical centers, is combined, compared, and then rapidly shared with the neuroscience community. In fact, the data is publicly available within a week in most cases.

The richness of the data and the speed of its availability have energized neuroscientists worldwide, as evidenced by the tens of thousands of downloads from the ADNI website and dozens of papers based on the ADNI data. Around the globe, researchers are using these data in a race to find biomarkers that will identify potential Alzheimer’s victims—a breakthrough that could lead to diagnosis a decade or more in advance of symptoms, and with it, the chance for treatments that would halt the disease process before its insidious effects take hold.

This data-intensive research shows that not only is it important to collect and analyze information, but also to share it as widely and quickly as possible. And back to Roueché: If you haven’t read The Medical Detectives, do yourself a favor and pick up a copy.

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