Patients & Participants Resources
The MRCT Center has developed resources with, and for, patients and participants.
Resources for the community of patients, participants and caregivers include:
- A Participant Bill of Rights
- Research Information for Young People
- A Clinical Research Glossary to explain research concepts in plain language
- Information to Guide Decision Making Around Receiving Individual Research Results
- A Tool for Figuring out Research Costs and Payments
- Covid-19 flyers to introduce research within the context of the pandemic
- Toolkit “Including Young People in Research“
The MRCT Center welcomes patients, participants, advocates, and family members who have experience related to clinical trials to volunteer in our workgroups and towards our efforts. Please contact MRCT@bwh.harvard.edu. Please include a few sentences about your experience in clinical research.
Participant Bill of Rights
For people who want to learn more about what to expect when deciding whether to join a clinical research study.
Research Information for Young People
Informative brochures explaining clinical research and a series of International Children’s Advisory Network (iCAN) videos featuring young people from all over the world sharing their experiences of participating in clinical research.
What is Assent? – ARABIC ›
This brochure defines assent and what young people should consider before providing research assent.
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What Happens at the End of a Research Study? – ARABIC ›
This brochure explains what happens after your last study visit with researchers and how they might use information they collected from you.
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Assent to Consent – ARABIC ›
This brochure explains what happens when a child participating in research becomes a legal adult and is asked to consent to continue participation.
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What is Clinical Research? ARABIC ›
This brochure defines clinical research and what young people should consider before deciding to participate in a clinical research trial.
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Time to Listen: Hearing from Young People in Clinical Research – PART 2 ›
In a proof of concept concluding video, the same 3 young people watch excepts of adults presenting at an international webinar on elevating the voices of […]
Learn More › Assent to Consent ›
This brochure explains what happens when a child participating in research becomes a legal adult and is asked to consent to continue participation.
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What Happens at the End of a Research Study? ›
This brochure explains what happens after your last study visit with researchers and how they might use information they collected from you.
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What is Clinical Research? ›
This brochure defines clinical research and the difference between research and medical care.
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Sharing Your Information (Data) In Research ›
This brochure explains what data is and how researchers use your data in a study.
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What is Assent? ›
This brochure defines assent and what young people should consider before providing research assent.
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What Is a Focus Group & Why Should I Join One? ›
This brochure explains what a focus group is and what you can expect if you join one.
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Sensitive Information In Research ›
This brochure explains why researchers might ask you questions about sensitive topics and how they protect your privacy.
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Prioritizing Young People’s Voices in Clinical Research Part 1 ›
Youth share their experiences receiving medical care and healthcare, and express what they believe researchers should ask young people about clinical […]
Learn More › Prioritizing Young People’s Voices in Clinical Research Part 2 ›
Youth share their preferences on what doctors have communicated to and with them, and on decision making related to participation in clinical research.
Learn More › Prioritizing Young People’s Voices in Clinical Research Part 3 ›
Youth share what they believe researchers should tell young people about clinical trials and research. They further share their ideas on what motivates […]
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Time to listen: Hearing from Young People in Clinical Research – Part 1 ›
Young people share their experience in clinical research, including: what it is like when a doctor or researcher talks to them as a child […]
Learn More ›Clinical Research Glossary
Learn more about words commonly used in
clinical research.
Individual Return of Results
A guide to help participants decide if they wish to receive individual results from a research study.
Costs and Payments
A list of questions for patients, participants and caregivers to ask study teams about research study costs and payments.
“Including Young People in Research” Toolkit
A toolkit to facilitate and support those wishing to engage and include children and adolescents in research and research-related activities.