Datavant, Parkinson’s Foundation Forge Research Partnership

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by Mary Chapman |

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Datavant and the Parkinson’s Foundation are collaborating to enhance Parkinson’s disease (PD) patient registries and promote involvement in healthcare industry-sponsored research, with the broader goal of driving insights into the progressive neurodegenerative disease.

Datavant seeks to improve industry-wide data sharing through technology that protects patients’ privacy while linking patient health records across datasets. In this collaboration, the foundation will use Datavant’s technology to connect multiple datasets with the foundation’s Parkinson’s Outcomes Project and the PD GENEration study.

With more than 13,000 participants in five countries, the Parkinson’s Outcomes Project is a clinic-based, longitudinal natural history study of Parkinson’s patients. Begun in 2009, it’s touted as the largest-ever clinical study of Parkinson’s disease. Through it, the foundation’s Centers of Excellence track and monitor their care of patients over time.

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PD GENEration is the first national initiative of its kind that provides patients with free genetic testing and counseling for seven genes linked to Parkinson’s disease.

As part of the foundation’s pledged effort to connect with new populations, the PD GENEration study was recently expanded to some 100 sites, while continuing to provide at-home testing. The study seeks to improve the lives of those with Parkinson’s through research that advances personalized medicine and improved therapeutics.

Based on results, the study also intends to help patients and their healthcare team determine  eligibility for enrollment in certain clinical studies. As of now, PD GENEration is at 28% of its goal of 15,000 participants, with current enrollees hailing from all 50 states plus Puerto Rico and the Dominican Republic.

By using Datavant’s technology, de-identified clinical data can be shared between the two studies to assist and advance future Parkinson’s investigations.

“We are thrilled to partner with the Parkinson’s Foundation, which is a global leader enabling research into Parkinson’s and improving life for those living with the disease,” Travis May, Datavant founder and president, said in a press release. “Enabling novel linkages across clinical and genomics datasets will help to advance biomarker-based research into the causes and treatment of Parkinson’s disease.”

“We hope to provide the research community with tools and a library of data that help advance Parkinson’s research, create discoveries in treatment, and improve the care of people living with Parkinson’s disease,” said James Beck, PhD, the foundation’s chief scientific officer.

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