Including Young People in Research

Tools

Published on: March 21, 2023

Description: The “Including Young People in Research” toolkit offers tools, checklists, and considerations to support the intentional inclusion of the youth perspective in pediatric clinical trials and product development. These materials can assist investigators, Institutional Review Boards (IRBs)/Ethics Committees (ECs), sponsors, and others working with children and adolescents to engage youth respectfully and thoughtfully, helping to ensure that their perspectives are valued, gathered, appropriately weighted, and integrated. We expect that individuals will adapt these tools to their local context and specific study needs. We invite you to watch our short companion video for additional details on how to use and adapt these tools.

Tools, checklists, and considerations to assist investigators, Institutional Review Boards (IRBs), Ethics Committees (ECs), sponsors, and those working with children and adolescents to thoughtfully engage youth and ensure their perspectives are valued, weighted, and integrated.

Including Young People in Clinical Research – PDF

Including Young People in Clinical Research – A “How-to” Guide

Related Resources

Promoting Global Clinical Research in Children: Informing the Future (webinar)

Promoting Global Clinical Research in Children: Informing the Future (presentation slides)

Guiding Principles for Protecting Children in and through Pediatric Clinical Research

Advancing International Pediatric Clinical Research webinar series

Pediatric Research Information Materials

Prioritizing Young People’s Voices in Clinical Research – Part 1 (video)

Prioritizing Young People’s Voices in Clinical Research – Part 2 (video)

Prioritizing Young People’s Voices in Clinical Research – Part 3 (video)

Time to Listen: Hearing from Young People in Clinical Research – Part 1  (video)

Time to Listen: Hearing from Young People in Clinical Research – Part 2  (video)

Data Contributor Agreement Word Document

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Data Use Agreement Word Document

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Diversity, Inclusion, and Equity in Clinical Research: Guidance Toolkit & User Guide: Study Design, Conduct and Implementation

Toolkit & Users Guide

Developed on: August 2020

Developed by: MRCT Center Diversity Workgroup

Study Design Logic Model (PDF)
Study Design Logic Model (Editable PDF)
Study Design Key Performance Indicators (PDF)
Screen Failure Tracking Log (PDF)
Screen Failure Tracking Log (Word Doc)
Eligibility and Enrollment Log (PDF)
Eligibility and Enrollment Log (Word Doc)
Site Selection Logic Model (PDF)
Site Selection Logic Model (Editable PDF)
Site Selection Key Performance Indicators (PDF)
Feasibility Decision Tree (PDF)
Feasibility Questionnaire Modification Checklist (PDF)
Recruitment Strategy Document Template (PDF)
Recruitment Strategy Document Template (Word Doc)
Recruitment Strategy Logic Model (PDF)
Recruitment Strategy Logic Model (Editable PDF)
Recruitment Strategy Key Performance Indicators (PDF)
Recruitment Contingency Action Plan (PDF)
Participant Time Commitment Model (PDF)
Recruitment, Conduct, and Retention Logic Model (PDF)
Recruitment, Conduct, and Retention Logic Model (Editable PDF)
Recruitment, Conduct, and Retention Key Performance Indicators (PDF)

Related Resources

See related Resources, maintained on our project specific website:
Diversity, Inclusion, and Equity in Clinical Research

Introduction 

Participant and Community Engagement 

Participant Awareness, Knowledge, and Access

Workforce and Diversity: Training and Development 

Data Variables and Collection 

Stakeholder Commitments and the Future