Data and Resources

The Data and Resources Core has dual missions:

  • To develop and share resources and provide supports that will advance research on deprescribing, and
  • To spearhead initiatives to develop new science and consensus projects around measurement and data

In the beginning years of the network, we will be developing and disseminating resources that will be valuable to investigators conducting deprescribing research, and providing targeted consultations to investigators.

A Repository of IRB and DSMB Materials for Deprescribing Studies

Deprescribing studies may encounter some unique challenges related to human subjects protections and plans for safety monitoring. Institutional Review Boards (IRBs) may have questions about potential risks to patients, and researchers and IRBs may question which safety outcomes should be monitored. To help researchers navigate these challenges, we have gathered materials to share from several ongoing deprescribing studies, to serve as resources for the larger research community.

The materials available here include: portions of grant applications addressing Human Subjects issues; study consent forms; portions of IRB applications; examples of Data Safety & Monitoring Plans (DSMPs); and examples of reports you might provide to your Data Safety and Monitoring Board (DSMB). While there is no single right way to construct IRB applications, DSMPs, or related documents, these examples show how some thoughtful investigators have navigated these issues successfully in their own research.

Consultation Services

Ongoing mentorship is essential for junior investigators. However, sometimes both junior and senior investigators can benefit greatly from a targeted conversation with a content expert. Therefore, we have established a one-on-one consulting service.

A Repository of Measures Relevant to Older Adults

Our network is focusing on measures particularly relevant to deprescribing. The Older Americans Independence Centers (OAIC) Geriatric Research Instrument Library (GRIL) has been working hard to develop a repository of measures that are applicable to older adults in general many of which will be useful to investigators doing deprescribing research.

Resources (Under Development) Include:

A comprehensive database of completed and ongoing studies

Investigators conducting deprescribing research need to know what other studies are in their area to avoid duplication of efforts, facilitate collaborations, gain insights, and harmonize measures across studies.
Have you been part of a completed or ongoing deprescribing study?  Please sign up here so that we can email you to learn more about your study as the Core’s work progresses. 

A compendium of measures

Investigators designing deprescribing studies need information about measures, including their definition, operationalization, and validity, as well as which ones are most important to patients and which ones can be compared across studies.  As described in the Working Group Description below, we will develop a compendium of measures commonly used in deprescribing studies, including how they were defined in past studies of deprescribing and information on the validity and test characteristics of these variables. The Measures Working Group will contribute substantially to the content of this compendium.

Guide for data development, harmonization and management

Many single- and multi-site trials, particularly pragmatic trials, depend on electronic health record data to determine study eligibility and outcomes in a valid and consistent manner. This includes using these data to measure key markers of prevalent medication use and deprescribing. Using learnings from the Data Harmonization Working Group, the Data and Resources Core will develop and disseminate a ‘users guide’ to essential data infrastructure for deprescribing studies that use electronic health data. Development will be led by Core leaders Drs. Bayliss and Dublin with input from the Data Harmonization Working Group

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