Requesting RISE Data

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: Determine your project type.

• For Publication (academic request): For researchers interested in publishing the results as part of a scientific presentation or manuscript.
• Other (non-academic request): For researchers interested in the results for internal reference, use in marketing or advocacy materials, etc.

Step 3: Complete the RISE Data Use Request Form.

See a sample Rise Data Request Form.

Tip: Before completing the request form, 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:

First, ACR staff will review the request to make an initial determination of whether it is feasible and whether it competes with any other requests that are ongoing or have been submitted in the last 24 months.

After administrative review, the request will be scheduled for review by the RISE Research and Publications Subcommittee.

The RISE Research and Publications Subcommittee will review requests based on the following criteria:

• The request is feasible given the data available in RISE.
• The request and study design are in accordance with the relevant guidance provided in the AMA's Code of Medical Ethics.
• The research topic is not too similar to an ongoing RISE data request or one made within the last 24 months.

After the subcommittee has reviewed the request, ACR staff will contact requestors with the results of the review.

Important Information
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:

• Is an ACR/ARP member
• Is affiliated with an academic institution, not-for-profit organization, or governmental agency OR is employed at a private practice
• Does not receive funding for the project from a private company, such as a pharmaceutical or device manufacturer

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.