Requesting RISE Data

The process to request the use of RISE data is straightforward. Below is a chart with an overview of how it works.

RISE Registry data access process

Requesting Use of RISE Data

Step 1: Download and fill out the ACR's Disclosure Form.

Step 2: Complete the online Data Use Request Form that corresponds with your project type.

  • For Publication (academic request): For researchers interested in publishing the results as part of a scientific presentation or manuscript.
  • Not for Publication (non-academic request): For researchers interested in the results for internal reference, use in marketing or advocacy materials, etc.

Tip: Before filling out the request form, be sure to think through what specific data elements you need to answer your research question(s).

Review of Data Use Requests

All RISE data use requests will be reviewed by ACR staff and the ACR’s RISE Research & 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 & Publications Subcommittee.
    • If the project is intended for publication, it will be reviewed by the full subcommittee on pre-determined review dates.
    • If the project is not intended for publication, it will be reviewed by part of the subcommittee upon receipt. ACR staff will contact the requestor with specific details on the timing of the review.
  • The RISE Research & Publications Subcommittee will review requests based on the following criteria:
    • Goal of the study and alignment of the request with the ACR’s mission, vision, and values
    • Feasibility of research design given data in RISE
  • 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 Deadlines

Notifications Sent

April 6, 2017

June 1, 2017

July 7, 2017

September 1, 2017

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.

Analyzing RISE Data

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 disclaimer must be included on all abstracts, manuscripts, and presentations that make use of RISE registry data:
“This research was supported by the American College of Rheumatology’s RISE registry. The views expressed in this manuscript represent those of the author(s) and do not necessarily represent the official views of the American College of Rheumatology.”

Pricing

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/ARHP 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.