The Patient-Reported Outcomes Measurement Information System (PROMIS®) includes measures of physical, mental, and social health for adults and children.

Sharing datasets?

7 years 8 months ago #228

Investigators who collect data using PROMIS®, Neuro-QoL, ASCQ-Me, or NIH Toolbox® (the HealthMeasures) instruments and who are interested in sharing their data are welcome to upload data to the HealthMeasures Dataverse.

Please review the Dataverse User Guide prior to proceeding

All data files submitted must be completely de-identified.

Submitted studies should include not just a data file but relevant supporting documentation such as a data dictionary, keywords, protocol, or other files that may help future users understand the data and the study that generated it. At a minimum, you must provide: 1) a data dictionary where all of the variables in your dataset are clearly defined and 2) keywords that identify the names of the HealthMeasures instruments included in the dataset. Guidance for the correct measure names is available in the Publication Checklist here: Publication Checklist

Publishing your data in the HealthMeasures Dataverse has many advantages:
- Provides a formal citation for your data
- Allows you to link publications to datasets
- Fulfills data distribution requirements of funding agencies and publishers
- May lead to collaborations with other researchers who discover your data

The user’s guide includes detailed instructions but here are the basic steps to follow to upload your data to the HealthMeasures Dataverse:
1. Visit
2. Either ‘Log In’ or ‘Sign Up’ if you do not already have a Dataverse login
3. Click ‘Add Data’  ‘New Dataset’
4. Enter information describing your study in the metadata section. Be sure to include relevant keywords.
5. Select or Drag and Drop files to upload

a. Any file type (e.g., pdf, Excel, .csv) can be uploaded and downloaded ‘as-is’
b. Only the select data types listed in the user’s manual can be ‘ingested’ as tabular data by the Dataverse system. Ingested data allows end users to select from a variety of file types when they download the data, rather than only the file type that was originally uploaded. Ingested data files can also be explored (without download) by the TwoRavens Data Exploration and Analysis Tool built in to the Dataverse.
c. We recommend uploading SPSS datasets with embedded variable and value labels for the best end user experience.

6. If you do not want your dataset to be available for automatic download, use the ‘Restrict’ drop-down to set files to restricted status
7. ‘Save’ dataset
8. You may continue to edit information and upload additional files.
9. To make your study/dataset visible to others, click the ‘Submit for Review’ button. This will notify the HealthMeasures Dataverse administrators that you wish to publish your dataset. Your dataset is not published until the administrators review and approve.

Last edit: 1 year 2 months ago by nanrothrock.

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7 years 9 months ago #221

I have a dataset that includes a PROMIS measure. Would PROMIS like to have it? Also, are there other datasets that include PROMIS measures that I could access?

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Moderators: HealthMeasures