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NIH Collaboratory
Living Textbook of
Pragmatic Clinical Trials

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Rethinking Clinical Trials

A Living Textbook of Pragmatic Clinical Trials

  • Design
    • What is a Pragmatic Clinical Trial?
    • Decentralized Pragmatic Clinical Trials
    • Developing a Compelling Grant Application
    • Experimental Designs and Randomization Schemes
    • Endpoints and Outcomes
    • Analysis Plan
    • Using Electronic Health Record Data
    • Building Partnerships and Teams to Ensure a Successful Trial
    • Intervention Delivery and Complexity
    • Patient Engagement
  • Data, Tools & Conduct
    • Assessing Feasibility
    • Acquiring Real-World Data
    • Assessing Fitness-for-Use of Real-World Data
    • Study Startup
    • Participant Recruitment
    • Monitoring Intervention Fidelity and Adaptations
    • Patient-Reported Outcomes
    • Clinical Decision Support
    • Mobile Health
    • Electronic Health Records–Based Phenotyping
    • Navigating the Unknown
  • Dissemination & Implementation
    • Data Sharing and Embedded Research
    • Dissemination Approaches for Different Audiences
    • Implementation
    • End-of-Trial Decision-Making
  • Ethics & Regulatory
    • Privacy Considerations
    • Identifying Those Engaged in Research
    • Collateral Findings
    • Consent, Disclosure, and Non-Disclosure
    • Data and Safety Monitoring
    • Ethical Considerations of Data Sharing in Pragmatic Clinical Trials
    • Ethics for AI and ML
    • IRB Responsibilities and Procedures

Including Stakeholder Perspectives – ARCHIVED

CHAPTER SECTIONS

ARCHIVE Data and safety monitoring


Section 9

Including Stakeholder Perspectives – ARCHIVED

Expand Contributors

Susan Ellenberg, PhD
Jeremy Sugarman, MD, MPH, MA
Doug Zatzick, MD

Contributing Editors
Gina Uhlenbrauck
Liz Wing, MA

As for any trial, the DMC should include an experienced statistician and medical experts from the setting being monitored.

Given the focus on patient-centered outcomes in PCTs, the role of a patient representative [on DMCs] may be particularly important. — Ellenberg et al 2015

Patient representatives can offer a unique and valuable perspective on the emerging risk-benefit profile during the trial. Other expertise that may be advisable include a biomedical informatician.

Resources for Integrating Stakeholder Perspectives
Resource Description
Building Partnerships and Teams to Ensure a Successful Trial Living Textbook chapter that describes best practices for engaging stakeholders in PCTs
What We Mean by Engagement PCORI resource that includes tools and information for engaging patients and other stakeholders in research
Flynn et al 2013 Study on participants’ perspectives on safety monitoring in clinical trials

Previous Section Next Section

SECTIONS

CHAPTER SECTIONS

sections

  1. Introduction – Data and Safety Monitoring ARCHIVED
  2. Which PCTs Should Have a DMC? – ARCHIVED
  3. Monitoring Protocol Adherence – ARCHIVED
  4. Data Issues With Monitoring PCTs – ARCHIVED
  5. Monitoring for Serious Adverse Events – ARCHIVED
  6. Futility Assessment V. 2 – ARCHIVED
  7. Futility Assessment – ARCHIVED
  8. Case Study: Planning for Monitoring PCTs – ARCHIVED
  9. Including Stakeholder Perspectives – ARCHIVED
  10. Special Training and Resources for DMCs of Pragmatic Trials – ARCHIVED
  11. Additional Resources – ARCHIVED

REFERENCES

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Ellenberg SS, Culbertson R, Gillen DL, Goodman S, Schrandt S, Zirkle M. 2015. Data monitoring committees for pragmatic clinical trials. Clin Trials. 12:530-536. doi:10.1177/1740774515597697.

Flynn KE, Kramer JM, Dombeck CB, Weinfurt KP. 2013. Participants' perspectives on safety monitoring in clinical trials. Clin Trials. 10(4):552-559. doi:10.1177/1740774513484394.

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Version History

July 3, 2020: Minor corrections to layout and formatting (changes made by D. Seils).

December 13, 2018: Revised the title of this section (changes made by L. Wing).

Published August 25, 2017

current section :

Including Stakeholder Perspectives – ARCHIVED

  1. Introduction – Data and Safety Monitoring ARCHIVED
  2. Which PCTs Should Have a DMC? – ARCHIVED
  3. Monitoring Protocol Adherence – ARCHIVED
  4. Data Issues With Monitoring PCTs – ARCHIVED
  5. Monitoring for Serious Adverse Events – ARCHIVED
  6. Futility Assessment V. 2 – ARCHIVED
  7. Futility Assessment – ARCHIVED
  8. Case Study: Planning for Monitoring PCTs – ARCHIVED
  9. Including Stakeholder Perspectives – ARCHIVED
  10. Special Training and Resources for DMCs of Pragmatic Trials – ARCHIVED
  11. Additional Resources – ARCHIVED

Citation:

Ellenberg S, Sugarman J, Zatzick D. ARCHIVE Data and safety monitoring: Including Stakeholder Perspectives – ARCHIVED. In: Rethinking Clinical Trials: A Living Textbook of Pragmatic Clinical Trials. Bethesda, MD: NIH Pragmatic Trials Collaboratory. Available at: https://rethinkingclinicaltrials.org/chapters/ethics-and-regulatory/archive-data-and-safety-monitoring/role-of-stakeholder-perspectives/. Updated July 9, 2025. DOI: 10.28929/046.

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