Introduction

The Parkinson’s Disease Data and Organizing Center (PD-DOC) was established at the University of Rochester in 2004 as part of a cooperative agreement with the sponsor NINDS.  Its main mission is to facilitate clinical and translational research in PD by creating and managing shared resources.  The primary resource is the PD-DOC Database which is a de-identified, centralized and standardized database of clinical, biological and neuropathological information collected from patients with PD.  The PD-DOC Database contains the Core Data Set which is the information that should be collected on all subjects.  This Operations Manual describes the components of the Core Data Set, provides information on how to complete the instruments and shows the case report forms (CRFs) for each instrument.  Note that because of copyright restrictions, the instructions and the CRF for some of the instruments (see below) cannot be reproduced in this manual.  For these instruments, the materials will be obtained from the publisher by the PD-DOC and sent to approved users.

 

Forms 30, 32, and 36 cannot be reproduced due to copyright restrictions. Copies of the forms will be obtained from the publisher by the PD-DOC and sent to approved users and therefore are not included in the complete set of CRFs below. 

Investigators who submit data to the PD-DOC Database are required to seek permission from each subject to have blood samples sent to the NINDS Human Genetics Repository (at Coriell) as a permanent source of DNA for research purposes. Information about this process is also contained in this manual.