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Frameworks...
Return of Individual Results
Focus Area: Current Project
Focus Area: Transparency
Items listed by newest to oldest in each category.
Case Studies:
- IRR: Implementing a Robust, Scalable Participant Data Return Solution (CASE STUDY)
- IRR: Returning Non-Validated Test Results (CASE STUDY)
- IRR: Responsibly Returning Secondary Findings (CASE STUDY)
- IRR: Returning Routine Lab Results to Participants During a Clinical Trial (CASE STUDY)
- IRR: Supporting Participant Decision-Making in Genetic Testing Studies (CASE STUDY)
Project-specific Websites:
Frameworks:
- RETURN OF INDIVIDUAL RESEARCH RESULTS: ROADMAP FOR RESEARCH SPONSORS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: ROADMAP FOR IRBs & HRPPs (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: ROADMAP FOR PATIENTS & PARTICIPANTS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: ROADMAP FOR STUDY Staff & INVESTIGATORS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: WHY TO GET STARTED? (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: HOW TO GET STARTED (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS HOW TO RETURN IRR: IRR ROADMAP BY ROLE (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS HOW TO RETURN IRR: DETERMINING WHAT TO RETURN (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: RETURNING URGENT RESULTS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: HOW TO RETURN DIFFERENT DATA TYPES (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: RETURNING ACTIONABLE RESULTS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: RETURNING PERSONALLY VALUABLE RESULTS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS: RETURNING RESULTS WITH NO KNOWN IMPLICATIONS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS TOPICS: LIABILITY (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS TOPICS: STUDY INTEGRITY (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS TOPICS: FUNDERS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS TOPICS: REGULATIONS (FRAMEWORK)
- RETURN OF INDIVIDUAL RESEARCH RESULTS TOPICS: INFORMED CONSENT (FRAMEWORK)
- Return of Individual Results to Participants (Principles)
- MRCT Center Return of Individual Results to Participants Toolkit Version 1.2 (Toolkit)
- Return of Individual Results to Participants Recommendations Document Version 1.2 (Guidance)
Presentations:
- RETURN OF INDIVIDUAL RESEARCH RESULTS (IRR) WEBSITE LAUNCH WEBINAR
- Return of Individual Results to Participants – From Theory to Practice (Presentation)
- Disclosure and Transparency for Clinical Data Summit (Presentation)
- Using Data for the Public Good: Sharing Aggregate and Individual Results (Presentation)
Tools:
- RETURN OF INDIVIDUAL RESEARCH RESULTS RESOURCES: IRB APPROVAL CHECKLIST FOR RETURNING IRR (TOOLS)
- RETURN OF INDIVIDUAL RESEARCH RESULTS RESOURCES: HEALTHCARE PROVIDER CONTACT FORM TEMPLATE (TOOLS)
- RETURN OF INDIVIDUAL RESEARCH RESULTS RESOURCES: IRR INFORMATION SHEET FOR PARTICIPANTS TEMPLATE (TOOLS)
- RETURN OF INDIVIDUAL RESEARCH RESULTS RESOURCES: INFORMED CONSENT SAMPLE LANGUAGE (TOOLS)
- RETURN OF INDIVIDUAL RESEARCH RESULTS RESOURCES: RESOURCES FOR PARTICIPANTS (TOOLS)
Webinars:
Sponsor Resources:
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