Making PSG Databases Available to Researchers

Objective/Rationale: 
Information from clinical trials is not easily available to most researchers, especially if the trials are sponsored by industry. Making information from clinical trials more widely available may help with the design and conduct of future trials.  Researchers may also want to explore new ideas using information from completed trials.

Project Description: 
The Parkinson Study Group (PSG) has completed several industry sponsored clinical trials.  The information from these PSG trials is not widely available to researchers.  We plan to first check with the sponsors of these trials to get their agreement, and then to make the information available to researchers.  To do this we will develop methods to let researchers view and analyze the data, but not keep them.  We will also develop a review process to be sure the researchers have a clear and practical use for the Information, and will share the results.

Relevance to Diagnosis/Treatment of Parkinson’s Disease:  
Researchers may be able to design better clinical trials by review older studies.  They may also be able to ask questions about things that influence the progression or features of PD.  The answers to those questions may help guide future clinical trials.

Anticipated Outcome: 
We expect to have at least 3 databases that previously had restricted access available to researchers within one year.  We will have a review process that does not impede researchers from obtaining data in a timely fashion, but does help to maintain the proper use of the information.