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Data for Better Patient Care: As the RISE Registry Expands, So Do Its Ambitions

Thomas R. Collins  |  Issue: March 2020  |  February 25, 2020

There’s also a pathway for investigators who need preliminary data for an initial feasibility study or to build a competitive proposal for more funding. The subcommittee reviews are mainly an assessment of feasibility. “We’re trying to determine whether the question is feasible given the RISE data, that the request and study design follow ethical guidance, and—very importantly—that the research question is not too similar to another ongoing or recently published request,” she said.

The reviews aren’t based on the scientific acceptability, but sometimes, scientific matters can affect the feasibility of a proposal. There is typically at least one back and forth between reviewers, investigators and ACR staff.

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The time it takes from when a request is submitted to when a decision is reached and data are made available varies by the response times of investigators to subcommittee feedback and other factors. But generally, it takes “a few months,” said Dr. Liao When submitting a request, it helps to be familiar with the process and the RISE data.

“We strongly encourage anyone who’s interested in using RISE data to speak with ACR staff,” Dr. Liao said.

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Thomas R. Collins is a freelance writer living in South Florida.

References

  1. Schmajuk G, Kay J, Li J, et al. Patterns of medication use for patients with sarcoidosis: Data from the ACR’s RISE Registry (abstract 1119). Arthritis Rheumatol. 2019 Oct;71(suppl 10).
  2. Norgeot B, Glicksberg BS, Trupin L, et al. Assessment of a deep learning model based on electronic health record data to forecast clinical outcomes in patients with rheumatoid arthritis. JAMA Netw Open. 2019 Mar 1;2(3):e190606.

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Filed under:Meeting Reports Tagged with:2019 ACR/ARP Annual MeetingRISE

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