Information for Applicants

In conceptualizing and supporting the PD-DOC, NINDS is working toward achieving greater standardization, uniformity, quality, sharing and value of data collected in funded clinical and translational research studies of Parkinson’s disease. To this end, the following items are recommended for inclusion in preparing applications seeking NINDS funding:

1. Include the PD-DOC Core Data Set as at least part of the clinical data collection instruments to be used in your planned study.

2. Consider sending blood samples from study subjects to the NINDS Genetics Repository (housed at Coriell) for the establishment of a permanent source of DNA.

3. Consider informing study subjects that postmortem brain examination is desired in the event of death. Postmortem neuropathological findings can be recorded on the two PD-DOC neuropathology data forms.

4. NIH data sharing requirements can be satisfied by posting your final study data set on the PD-DOC website. Large multicenter studies can share data as a PD-DOC Linked Database. Smaller studies can use the PD-DOC Databases for Sharing process. See the model language that can be included in the "Data Sharing" section of your NIH application.

5. NIH requirements for public access to study results can be satisfied by posting electronic links to published papers resulting from your study on the PD-DOC website. For a Linked Database the publications will be part of the supporting documentation. For other databases, publications can be posted in the PD-DOC Databases for Sharing section.

Contact members of the PD-DOC for any questions.