It is our goal to provide researchers with the greatest flexibility to carry out scientific inquiries using the NKI-Rockland data. In this regard:
- We do not require authorship on any manuscripts generated using NKI-RS data; citation as a data source is sufficient.
- We do not require review of manuscripts generated using NKI-RS datasets; though we do strongly encourage careful documentation of any selection criteria applied to the NKI-RS in choosing datasets for your analysis.
- We do not require specification of planned data analyses prior to data access.
Protection of participant privacy is our first and primary concern.
Confidentiality was a paramount consideration in planning data-sharing requirements. Protecting participant privacy while also providing access to extensively revealing data was a goal. All imaging data are fully anonymized in compliance with HIPAA by removing any potential protected health information identifiers, including identifying facial features from anatomical images, and randomizing the timing of release. It is important to note that data users must be aware of the possible negative impact of defacing on some analysis toolkits (e.g., FreeSurfer), and exercise additional care when producing such images and/or sharing pre-processed surfaces. Additionally, the concurrently supplied psychometric data in the NKI-RS phenotypic protocol include individual item-level data and an increased breadth of phenotypic sampling.