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The process to request the use of RISE data is straightforward. Below is a chart with an overview of how it works.
Step 1: Download and fill out the ACR's Disclosure Form. You will be asked to upload this as part of the online request form.
Step 2: Complete the online Data Use Request Form that corresponds with your project type.
Tip: Before filling out the request form, be sure to think through what specific data elements you need to answer your research question(s).
All RISE data use requests will be reviewed by ACR staff and the ACR’s RISE Research and Publications Subcommittee. The process varies slightly based on whether or not the request is intended for publication. Once your request is received, it will go through the following process:
If you are interested in using RISE data as part of a grant, your request must be approved by the subcommittee before the grant application is submitted. In order to receive the review results before your grant application deadline, you must submit your data use request by the following deadlines.
Request submission deadline: July 10, 2018
Notifications sent: September 4, 2018
Request submission deadline: November 6, 2018
Notifications sent: January 7, 2019
Request submission deadline: March 6, 2019
Notifications sent: May 1, 2019
Request submission deadline: April 8, 2019
Notifications sent: June 3, 2019
If you need approval of your request by an upcoming notification date but missed the submission deadline, you can still submit your request and contact RISE@rheumatology.org with your application deadline. However, there is no guarantee that your request will be reviewed during the current review cycle.
Datasets are not shared directly with individual investigators or organizations. Instead, data analysis will be handled by one of three data analytic centers with special expertise in large dataset analyses: Duke Clinical Research Institute, University of Alabama at Birmingham, and University of California at San Francisco. All approved requests will be assigned to one of the centers. The ACR, requestor, and assigned center will work collaboratively to refine and conduct the analysis. Once complete, the results will be transferred to the requestor.
If the requestor plans to publish the results, the following acknowledgment must be included on all printed and digital materials, publications, abstracts, manuscripts, and presentations that make use of RISE Data.
“The data presented here was supported by the American College of Rheumatology’s RISE Registry. However, the views expressed represent those of the author(s) and do not necessary represent the views of the American College of Rheumatology.”
Scientific publications must also include the following at the end of the above acknowledgement:
“This study protocol was prepared by [NAME OF PRINCIPAL INVESTIGATOR]. The data analysis was executed by [NAME OF DATA ANALYTIC CENTER].”
To access RISE data, there will be an annual subscription fee in addition to a per-project fee to conduct the requested analysis. The per-project fee will vary based on the complexity of the request.
In an effort to make the registry accessible to all, the annual subscription fee may be waived if the requestor meets the following criteria:
Important Note: If you are interested in using RISE data as part of a non-ACR grant, your request MUST be approved by the subcommittee BEFORE the grant application is submitted. For more information, see the “Review of Data Use Requests” section.
General questions about requests for use of RISE data
Private company interested in using RISE data (contact us before making your first request)
Amy Beith Miller