Where’s the Data?

Master data organizer Li-San Wang has a tough task: trying to harness the power of over 20 years of fluid, DNA, scans, and tissue samples collected as part of  Alzheimer’s disease research efforts here at Penn.

Data is precious, especially in light of a brain bank storage freezer failure in the news this week. Our efforts to store and manage data are top-of-mind.

Like a good warehouse, data is only useful when it can be easily stored and retrieved. Thanks to a new five-year, nearly $4 million grant from the National Institute on Aging (NIA), Wang will be building an Alzheimer’s disease research data warehouse at Penn where information can be pooled together and cross-examined.  This robust NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) database will help researchers at and  beyond Penn match genetic targets with treatments that may prevent or neutralize damage resulting from a mutated or missing gene.

Collecting information over decades and across diseases – including Alzheimer’s disease, Parkinson’s disease, Frontotemporal Lobar Degeneration (FTLD), Amyotrophic lateral sclerosis (ALS) – has helped researchers start to see the interconnectedness, overlap and spread of the diseases.

In another collaboration, Penn’s NIA-funded Alzheimer’s Disease Center will include a new module for FTLD, under the direction of Penn ADC director John Trojanowski, MD, PhD. This will bridge information gathered in Penn’s FTLD Center with data collected from patients in the Penn Memory Center. The data will be sent to the National Alzheimer’s Coordinating Center (NACC), where large quantities of clinical and neuropathological data have been gathered from the nationwide set of federally funded Alzheimer’s Disease Centers and curated since 1984 . In the future, NACC hopes to create clinical modules tailored to Dementia with Lewy Bodies and possibly other dementia subtypes.

The comprehensive data projects are positive steps forward to help enhance inter-connectivity between different disease states to speed up research progress.

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