The PD-DOC Database, the Linked Databases and Databases for Sharing have been incorporated into the PD-DOC for the expressed purpose of data sharing with the public research community. Sharing data and other biomedical research resources reinforces open scientific inquiry, encourages diversity of analysis and opinion, promotes new research, makes possible the testing of new or alternative hypotheses and methods of analysis, supports studies on data collection methods and measurement, facilitates the education of new scientists, and permits the creation of new datasets when data from multiple sources are combined.            

Therefore, it is the policy of the PD-DOC that the PD-DOC Database, Linked Databases, and Databases for Sharing should be made as widely and freely available as possible while safeguarding the privacy of subjects. Access to PD-DOC databases is allowed only for research purposes.

DATA ACCESS PROCEDURES

All scientists requesting access to the existing PD-DOC Database or Linked Databases will be required to submit a paper (see below) or electronic Statement of Research Intent and Assurances (electronic). The Statement of Research Intent and Assurances need only be submitted once.  A paper (see below) or electronic Database Access/Consultation Request Form (electronic) must be completed and approved to download a PD-DOC 
database(s), request database subsets, data analyses or a consultation. A new form must be completed for each new request.

 

Requests for data should be submitted to the PD-DOC Project Manager at the University of Rochester, Department of Neurology, 1351 Mt. Hope Avenue, Suite 100, Rochester, NY 14620 or fax to 585-473-4678. Call 585-275-1034 with any questions.