Parkinson Disease Data-Sharing Partnership Launched

November 26, 2019

The private-public partnership aims to share patient data in hopes of uncovering new biomarkers related to Parkinson disease.

Walter Koroshetz, MD

A new groundbreaking data portal has been launched by the Accelerating Medicines Partnership (AMP) Parkinson disease (PD) program, which will allow researchers to share and analyze complex datasets in hopes of developing more effective therapies for PD.

The AMP PD Knowledge Portal will provide deidentified information from 4298 patients with PD and healthy controls. The partnership includes the National Institutes of Health (NIH) and FDA, as well as industry leaders Celgene, GSK, Pfizer, Sanofi and Verily, and non-profit organization The Michael J. Fox Foundation for Parkinson’s Research (MJFF). The partnership will be managed through the Foundation of the National Institutes of Health (FNIH).

“The combination of many data sets could allow researchers greater power to analyze potential biomarkers for Parkinson disease. This effort follows other AMP programs which have the shared goal of changing the way we go about the business of studying disease,” Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke (NINDS), said in a statement.

Key contributors to the data portal include MJFF, the NINDS BioFIND Study, the Harvard Biomarkers Study of Brigham and Women’s Hospital and Massachusetts General Hospital, the NINDS Parkinson’s Disease Biomarkers Program, and MJFF’s Parkinson’s Progression Markers Initiative, who will contribute data from cerebrospinal fluid, RNA, plasma and DNA samples collected in previous trials and studies. AMP PD will also allow researchers to incorporate additional data sources and new types of data, including proteomics, which is already underway.

AMP PD scientific teams have made it a point of emphasis to ensure that the data gathered is accurate and consistently reported. Researchers have used data harmonization as a tool to compare a wide pool of information and provide the best practices for how to integrate new data into the platform. Notably, researchers will be able to analyze longitudinal data from across an individual’s lifespan or disease course.

Researchers can fill out an application to access to the knowledge portal and interact with data submitted by other researchers here.

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

REFERENCE

Accelerating medicines partnership launches data knowledge portal for parkinsons disease [news release]. National Institutes of Health.November 22, 2019. nih.gov/news-events/news-releases/accelerating-medicines-partnership-launches-data-knowledge-portal-parkinsons-disease. Accessed: November 25, 2019.