Every individual who takes part in a clinical trial is entitled to a set of core rights, regardless of the trial’s location, sponsor, or medical condition involved. These rights are protected by law and enforced by independent ethics committees, government regulators, and international research guidelines.
Here’s what you need to know:
Voluntary Participation
Your participation in any clinical trial is completely voluntary. You are free to decide whether or not to join a study after reviewing all relevant information.
You also have the right to:
- Take your time deciding, there is no pressure to rush
- Decline to participate without giving a reason
- Say “no” at any point, even after signing the consent form or starting the trial
Key Note: You will never lose access to your regular medical care or insurance benefits if you choose not to participate or decide to leave a study.
Right to Withdraw at Any Time
Even after joining a study, you may stop participating at any time, for any reason.
You can withdraw by:
- Informing the research team or site contact directly
- Requesting help from DecenTrialz to initiate the withdrawal process
- Simply choosing not to proceed further if you haven’t yet consented
Withdrawing will not affect:
- Your relationship with your doctor
- Your eligibility for future studies
- Any care you are currently receiving
Key Note: If you’ve received any study treatments, the team may ask you to attend a final safety check, but this is optional and for your benefit.
Right to Understand Risks
Before you enroll in a clinical trial, you have the right to be informed, in plain language, about any known or possible risks involved. This includes:
- Side effects of medications or procedures
- Unknown outcomes due to investigational treatments
- Any physical, emotional, or privacy-related risks
You will receive a written consent form that outlines these risks. You also have the right to ask for clarification and take the form home for review.
Key Note: You cannot be enrolled in a study until you have fully understood and agreed to the risks. This is a legal and ethical requirement.
Right to Ask Questions
As a participant (or potential participant), you have the unrestricted right to ask any question at any point during the research process, whether you’re still exploring options, reviewing a consent form, or already enrolled in a study. Your curiosity, concerns, and clarity matter deeply.
Asking questions helps you:
- Understand the trial better
- Make informed decisions
- Protect your safety, rights, and privacy
The research team, and the DecenTrialz support team, are there to ensure all your questions are answered in plain language, respectfully and without pressure.
Examples of Questions You Have the Right to Ask
About the Study Itself:
- What is the purpose of this study?
- What condition or problem is the trial trying to address?
- How long will the study last?
- Will I need to stay at a hospital or can I participate from home?
- Has this treatment been tested in humans before?
About Participation & Procedures:
- What kinds of procedures or tests will I undergo?
- How many visits are required, and where do they take place?
- What will I need to do between visits?
- Is this a randomized trial? What does that mean for me?
- What happens if I miss a visit or need to reschedule?
About Risks & Benefits:
- What are the known or possible side effects?
- What if I experience a serious health issue during the trial?
- Are there any long-term risks?
- What direct benefits can I expect, if any?
- What should I do in case of an emergency during the study?
About Costs & Compensation:
- Will I be paid or reimbursed for participating?
- Will the study cover travel expenses or childcare?
- Do I have to pay for any part of the treatment or testing?
- Will my insurance be billed?
About Data & Privacy:
- What personal data will be collected and how will it be stored?
- Who will have access to my information?
- Will my name or identity be revealed in the results?
- Is this study HIPAA-compliant?
- Can I delete my data or withdraw my consent later?
About My Rights:
- Can I leave the study at any time?
- What happens to my data if I withdraw?
- Can I join another trial in the future?
- Who can I speak to if I have a complaint?
About Follow-up & Results:
- Will I be informed about the results of the study?
- Will I receive updates after the trial ends?
- Can I receive a summary of what was learned from my participation?
Key Note: There are no “wrong” questions. You are not expected to have medical knowledge, and all research staff are required, by law and ethics, to answer your questions respectfully and clearly.