Data portal offers de-identified info on patients with Parkinson’s

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A new data portal is providing medical researchers with de-identified information from 4,298 Parkinson’s disease patients, including cerebrospinal fluid, DNA samples, plasma and RNA.

“The portal enables researchers to study complex data sets and perform genome-wide analyses at a scale previously impossible,” according to the National Institutes of Health.

The portal was launched by the Accelerating Medicines Partnership (AMP) program for Parkinson’s disease (PD), a public-private partnership between NIH, the Food and Drug Administration, as well as industry partners Celgene, GSK, Pfizer, Sanofi, Verily and the non-profit Michael J. Fox Foundation for Parkinson’s Research.

“One important part of this platform is that, in addition to providing a place for storing complex data, we are also providing the tools to analyze that data within the platform itself,” said Debra Babcock, MD, program director at National Institute of Neurological Disorders and Stroke and co-chair of the AMP PD Steering Committee. “In this way, we are bringing scientists to the data, which will increase opportunities for collaboration.”

According to NIH, one of the unique features of the data in the AMP PD Knowledge Portal is that they are longitudinal, allowing researchers to analyze data from across an individual’s lifespan or disease course. The purpose is to provide a “deep molecular characterization and longitudinal clinical profiling of PD patient data and biosamples with the goal of identifying and validating diagnostic, prognostic and/or disease progression biomarkers for Parkinson’s disease.”

In addition, the AMP PD Knowledge Portal is able to incorporate other data sources and types such as proteomics—a project that is currently planned.

“The AMP model has provided a unique platform for bringing together diverse patient cohorts, advances in technology and scientific expertise to study Parkinson’s disease on a scale that has not been attempted before,” said David Wholley, senior vice president of research partnerships at the Foundation of the National Institutes of Health. “With the AMP PD Knowledge Portal, we are helping the scientific community worldwide to fast-track discoveries that we hope will ultimately help Parkinson’s disease patients and their families.”

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