Model Data Sharing Language
1. As a Linked Database (for large, multicenter studies)
We will post the final de-identified database on the website of the NINDS-supported Parkinson’s Disease Data and Organizing Center (PD-DOC; www.pd-doc.org). The data will be shared as a PD-DOC “Linked Database”, which are derived from large, usually multicenter studies. Linked Databases also have supporting documents posted, including a study synopsis and a data dictionary. All data to be shared will have individual identifying information (e.g. HIPAA identifiers) removed. Each subject ID code will be replaced by a confidential PD-DOC ID prior to the posting or release of any data. Linked Databases are currently made available for public sharing on the PD-DOC website as SAS transport files that can be directly downloaded. The database will be preserved and archived by both the Study PI and the PD-DOC.
2. As part of Databases for Sharing (for other, smaller studies)
We will post the final de-identified database on the website of the NINDS-supported Parkinson’s Disease Data and Organizing Center (PD-DOC; www.pd-doc.org). All data to be shared will have individual identifying information (e.g. HIPAA identifiers) removed prior to it being submitted for posting. The database will be posted on the “Databases for Sharing” section of the PD-DOC website. It will be posted as either SAS transport files or as Comma Separated (CSV) files. SAS transport files allow users to convert the database into the SAS platform they are using. CSV files allow users to read the database using Excel or other software applications. The databases will be available for direct downloading by interested individuals. The database sent will be preserved and archived by both the Study PI and the PD-DOC.