COINS Database Overview
All of the full phenotypic NKI-RS data releases are accessible via the Collaborative Informatics and Neuroimaging Suite (COINS; Scott et al., 2011). COINS was selected to provide the primary infrastructure for data capture for the NKI-RS, removing traditional paper and pencil approaches and integrating phenotypic and imaging data. COINS, developed by the Mind Research Network, was created to facilitate communication and cultivate a data-sharing community by providing researchers with an open source information system that includes web-based tools to manage studies, subjects, imaging, and phenotypic data. This suite of tools has an intuitive ease of use and offers versatile data upload/import/entry options, rapid and secure sharing of data among investigators, querying of data types and assessments, real-time reporting, and study-management tools. Among its many features, the web-based assessments, automated data scoring, and integrated management of phenotypic and imaging data are potentially the most attractive. Web-based assessment entry completed by participants and research staff increases efficiency and accuracy by eliminating the need for intermediate data entry (i.e., paper to computer). Equally important, individual item-level responses are coded in the database, providing researchers with a far richer phenotypic dataset for exploration. In addition, protected health information can be unlinked within COINS to facilitate data sharing while maximally protecting participant anonymity. Of note, COINS is in compliance with Health Insurance Portability and Accountability Act (HIPAA) standards and implementation rules.
Requesting Data in COINS
To request data from a full phenotypic release using the COINS interface:
- Navigate to the COINS Data Exchange.
- Enter your e-mail address, type a password twice for the account in the lower right box, and click Get Account if you are new to COINS. Otherwise log in as you normally would.
- From the Data Exchange menu at the top, select Browse Available Data.
- When you are ready, drag an AND Data Group onto the Request Workspace. Into the AND group, drag a Studies data filter. Click Study Name and select NKI-RSI, and click apply. This will ensure you request data from the NKI-RS study (it may take up to 6-12 hours for our team to approve your one-time data access request). You may now add MR or Assessments filters to the AND group to request specific images and assessments. It is also possible to filter by subject characteristics.
Below is a video tutorial describing how to use the COINS Data Exchange in more detail:https://www.youtube.com/embed/YjMbCq5NBuc
Interpreting Data Downloaded from COINS
Once you are able to access COINS, you will be able to readily download assessment data. To intrepret this data, you will need to download various codebooks that describe the meaning of the column names in the pulled data in greater detail. To download these codebooks, perform the following steps:
- Navigate to the main screen of the COINS data exchange. It should appear as follows:
- Click on Study Information.
- Under Select a Study, navigate to NKI-RSI. There will now be several documents you may download in the box on the right.
Below is a short description of each item:
- BIRD.pdf – A description of the variables collected in the BIRD assessment.
- DS CODEBOOK.csv – A comprehensive document containing labels for individual assessment item ID codes obtained in the Rockland sample studies, as well as labels for assessment data itself.
- NKI_RS_Enhanced_DKEFS_datadictionary8_6_2014.xls – Labels for the DKEFS measure codes.
- PennCNB_Test_Descriptions_NKLINE.pdf – Descriptions of the measures acquired in the Penn CNB.
- RAVLT data dictionary_4_27_2016.xlsx – Descriptions of the measures acquired in the Rey Auditory Verbal Learning Test.
- Relationships.csv – An identity matrix multiplied by 1000.