RISE Frequently Asked Questions

Have questions about RISE? Wondering if you should participate in this electronic patient data reporting system? Read our FAQs for details about general RISE information, RISE for health care providers, and RISE for researchers. If you still have any questions, please contact us at RISE@rheumatology.org.

General RISE Questions

Who is eligible to use RISE?

RISE is available to currently practicing rheumatologists and rheumatology health professionals and is free to ACR and ARP members.

Who monitors and reviews the registry?

ACR provides oversight and monitoring of the registry and its information integrity.

What type of data will be collected?

RISE compiles information that is collected during the course of routine clinical care and entered into EHRs, including demographic data, medications, and laboratory studies.

Are there privacy regulations or policies in place to protect patients' health information? Is it HIPAA compliant?

Yes. The RISE registry infrastructure is HIPAA compliant. The ACR will not have access to a patient's protected health information (PHI); when the patient's information is entered into the system, their PHI is stored separately. The practice itself will have access to the PHI data, which they can use for their own needs and for reporting on quality measures to the Centers for Medicare & Medicaid Services (CMS). Any data used by the ACR or third parties for research or other purposes will be de-identified, aggregate (not individual) data.

How will RISE data be used?

  • Improve patient care - By providing access to detailed and aggregate data, as well as benchmarks, RISE can be used for rapid-cycle quality improvement. Moreover, RISE will allow rheumatologists to investigate treatment successes and adverse event patterns, which ultimately leads to better treatment decisions and improved patient outcomes.
  • Research - The ACR will use the aggregate and de-identified data in RISE to demonstrate the value of rheumatology and advance the specialty. The ACR will also review third party requests for aggregate and de-identified data; however, those data requests will undergo a thorough review and vetting process. No data that would identify patients or providers will be provided to researchers.
  • Advocacy - The ACR is involved with ongoing advocacy efforts related to the rheumatology community. Using RISE data, the ACR can prove the value of quality patient care to key stakeholders and influencers (e.g., lawmakers, CMS, insurance) to better advocate for the field of rheumatology.

Health Care Providers

What are the participation requirements?

Prior to RISE participation, providers/practices must:

  • Complete the RISE participation agreement, which includes a Data Use Agreement and Business Associate Agreement components.
  • Review the RISE data model and provide information on what registry data fields are currently captured in your EHR. Please note the ACR does not require workflow changes in order to participate in the registry. If there are data you are not capturing in your EHR, that is acceptable.
  • Work with the ACR's registry partner, FigMD, over a series of conference calls to review and refine data mapping to the registry.

Do I need IRB approval to use RISE in my practice?

In 2014, the Western IRB reviewed RISE and determined that, because RISE is a quality improvement registry focused on healthcare delivery and on measuring and reporting data for clinical, practical or administrative uses, individual practices do not need IRB approval or patient consent to use RISE. However, you should check with your organization or institution to determine if you are required to get independent approval or exemption from your local IRB.

Will this replace my current participation in the Rheumatology Clinical Registry (RCR) or other registries?

The ACR will work to transition practices using the RCR to RISE. The RISE registry will be the only registry you need for quality reporting and quality improvement for RA patients. Participating in RISE does not require that you participate in other registries; however, RISE practices are more than welcome to participate in additional registries.

How much time will staff spend implementing the RISE Registry?

Typically, practices spend a total of 6-10 hours over several months to prepare for and successfully incorporate the RISE registry.

Is training available for participants before the registry goes live at my practice?

Yes. All sites that participate in the RISE registry will be trained during the deployment process.

How much time will staff spend inputting data into the registry while working?

None. Although time is required to set up the RISE registry in your software, once installed, RISE automatically syncs with EHRs for easy integration into your practice.

How will RISE help with quality reporting incentive payments and avoiding penalties?

RISE has been designated as a qualified clinical data registry (QCDR) by CMS, meaning that providers using RISE who sign an additional agreement indicating that they want to participate for quality reporting purposes will be able to do so automatically. In addition, participating practices will meet the Advancing Care (MU) measure of reporting to a specialty registry, saving valuable staff time and resources.

Can I run my own reports?

Yes. RISE gives you the ability to run both standard and custom queries for your patient population. You will be able to view your patient population compared to the aggregate of the patients in the registry.

Will the data RISE collects from my EHRs be shared or released?

Within your practice, each provider will only be able to see RISE data on his/her patients and the practice's overall benchmarks. The practice administrator is the only person who will be able to see RISE data for all providers in the practice.

When RISE is used for federal reporting, RISE data, including PHI, will be encrypted and securely shared with CMS, as required by federal regulations.

When RISE data is used for research purposes, it is aggregated and de-identified to ensure that investigators do not have access to PHI.

I have a question that hasn't been answered here. What should I do?

We're happy to answer any other questions you may have. To learn more about using RISE in your practice, please contact us at RISE@rheumatology.org.


Can RISE data be used for research and publications?

Yes. The ACR has a process through which investigators can request analyses of data from the RISE registry. Details on requesting data can be found on the Requesting RISE Data page.

What is the process for requesting data from the RISE registry for research purposes?

An overview of the data request process is laid out on the Requesting RISE Data page.

Do I need IRB approval to use RISE data for research?

RISE data is de-identified and the procedures for collecting the data and using it for research purposes have been approved by the Western IRB. However, researchers may be required to have their proposed projects independently approved or exempted by their local IRBs.

Can you send the data to me for analysis?

No. Currently, the ACR does not release limited datasets to individual investigators or organizations. Instead, it contracts with data analytic centers that have both the experience and technical infrastructure to analyze complex, large electronic health record-based datasets.

What rheumatic diseases are captured in RISE?

RISE extracts all EHR information collected by rheumatology professionals during routine clinical practice, which includes a wide range of rheumatic diseases. If you would like to see examples of the data routinely collected, the data dictionary for RISE quality measures is available upon request by contacting RISE@rheumatology.org.

Is there a case report form for RISE?

No. RISE collects all data input into EHR systems, so there is no list of pre-defined data elements to pull. If you would like to see examples of the data routinely collected, the data dictionary for RISE quality measures is available upon request by contacting RISE@rheumatology.org.

Do you have biologic samples?

No. Because the RISE registry works by digitally pulling information from electronic health records, the ACR does not collect or request biologic samples.

I have a question that hasn't been answered here. What should I do?

We're happy to answer any other questions you may have. To learn more about accessing RISE data for research purposes, please send an email to RISE@rheumatology.org.

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