We're often advocating for investigators to make de-identified data and biosamples from clinical studies available to other scientists. In this recent editorial in Personalized Medicine, for example, Foundation leaders wrote about how such practice could aid in discovery and replication of new Parkinson's understandings and treatments.
But what do research participants think? Sue Dubman, a health care and informatics researcher diagnosed with Parkinson's disease in 2009, wrote in the Journal of Parkinson's Disease:
As a researcher turned patient, I understand the importance of clinical research data and results. I want my information to be shared for the greater good. While I certainly have concerns about use and re-use of my data, these can be alleviated by responsible sharing of data that protects patient privacy and security; by incentives for researchers to produce and ensure high quality data for sharing with peers, the broader scientific community and the public; by increased data circulation and by data sharing encouraged or mandated by government.
The MJFF-led landmark biomarkers study, the Parkinson's Progression Markers Initiative, makes data available in real-time (it's been downloaded more than 800,000 times), and our Foundation is involved in consortia and initiatives to make it easier to analyze available data across studies. We'll keep you updated of advances in this area and other means to accelerate research.
