Participants

Whether you’re considering joining a research study or are already a participant, we’re here to help protect your rights and wellbeing.

Supporting you

Guidance for participants in a research trial

Joining a research study means you are directly contributing to the advancement of science.

Your involvement as a participant may help bring new treatments a step closer for future patients, improve understanding of diseases or conditions, or help improve social science and observational studies.

But participating in a research trial may not be right for everyone, and there are important factors to consider before deciding whether to take part.

To help you make an informed decision, we have compiled key resources, questions to ask and downloadable documents. Our ethics committees are here to ensure research studies are conducted with integrity, transparency, and respect.

eProtocol Help
Helpful resources

Learn your rights and what to expect

These guides will help you understand what to expect as a research trial participant and where to find support along the way.

Understanding research

Learn how research is reviewed, why ethics oversight matters, and how Bellberry safeguards participants.

Read more

Before you take part

Find out what to consider before joining a study, including questions to ask, and access downloadable resources.

Read more

Complaints

Have a concern about a study or its conduct? Learn how Bellberry can help and what to do next.

Read more
Why it matters

Supporting safe, ethical trials

Behind every study reviewed by a Bellberry ethics committee is a team of compassionate people committed to making a meaningful difference for participants.

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“It’s about honouring the dignity of human beings. We feel like we’re the ‘around the table’ voice for [medical research] participants.”
Sharonne Price
Bellberry’s longest-serving Human Research Ethics Committee member
“Everything we do is guided by our core purposes: protecting the welfare of research participants and improving the quality, efficiency and effectiveness of research.”
Kylie Sproston
Bellberry Chief Executive Ocer
“It’s amazing that the work we’re doing is playing a major role in patient care. For some conditions, people would have received a fatal diagnosis maybe five years ago. Now we’ve got improved quality of life and even improved outcomes.”
Professor Andrew McLachlan AM
Bellberry HREC Chair & Head of School and Dean of the Sydney Pharmacy School, University of Sydney
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20+

Years in clinical trial ethics review

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Non-profit

Bellberry is 100% independent

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11,000+

Studies reviewed by Bellberry since 2004

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200+

Expert committee members ensuring rigorous oversight

About Bellberry

Our role in protecting participants

Here at Bellberry, we don’t run studies or recruit participants.

Instead, our Human Research Ethics Committees (HRECs) review clinical trials to ensure they meet national ethical standards and prioritise participant safety. As a non-profit, we also reinvest into a range of philanthropic areas, including projects that help improve and protect the welfare of research participants.

We help ensure that:

  • Participant information is clear and easy to understand
  • Potential risks are identified and minimised
  • Consent is informed and voluntary
  • Data is handled securely and respectfully
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FAQs

Answers to common queries

Bellberry’s Human Research Ethics Committees provide independent ethical oversight for human research across Australia.

We don’t run studies or recruit participants. Instead, our committees review research proposals and clinical trials to ensure they meet national ethical standards and prioritise participant safety.

If you experience any problems during your clinical trial, contact your study team. They are there to support you, answer your questions, and help ensure your safety throughout the study.

  • Study doctor — Your main medical contact for any health concerns, side effects, or questions about the study treatment.
  • Study coordinator or research nurse — Often your first point of contact for practical questions, study-related concerns, or reporting issues.
  • 24/7 or after-hours contact number — Most clinical trials provide an emergency contact number on your Participant Information and Consent Form (PICF). Use this if you need assistance outside normal business hours.

In urgent situations: If you have a serious or life-threatening medical issue, call emergency services immediately rather than waiting to contact the study team.

For non-medical concerns: If you have a complaint about the study or concerns about your rights as a participant, contact the Human Research Ethics Committee (HREC) using the details provided on your Participant Information and Consent Form (PICF). For more information, view our Complaints page.

If you experience a reaction to a study drug, contact your clinical trial team (study doctor, study coordinator or research nurse) immediately using the information on your Participant Information and Consent Form (PICF). They can assess your symptoms, provide advice, and ensure you receive appropriate care.

In an emergency
If you experience a serious reaction — such as difficulty breathing, chest pain, severe swelling or rash, or loss of consciousness — call emergency services immediately rather than waiting to contact the study team.

It is important to report any side effects or reactions, even if they seem minor, as this information helps researchers monitor the safety of the study treatment.

You can withdraw from a clinical trial at any time, for any reason, without penalty. Taking part in a clinical trial is entirely voluntary, and you do not have to explain your decision if you choose to leave.

Let your study team know
Tell your study doctor, study coordinator, or research nurse that you wish to withdraw. While they may ask why you are leaving, giving an answer is optional; you are not required to provide a reason.

Your participation will end
You will stop receiving the study treatment and no longer need to attend study visits. In some cases, the study team may ask if you are willing to come in for a final safety assessment.

Your safety remains a priority
Depending on the study and your health situation, the study doctor may recommend follow-up care or monitoring to help ensure a safe transition out of the trial, especially if stopping suddenly could affect your health.

Information already collected may still be used
Data collected before you withdraw will usually remain part of the study and may be used in the final analysis, as outlined in your Participant Information and Consent Form (PICF). Some studies may ask for permission to continue collecting information from your medical records, but you can choose whether or not to allow this.

Your regular healthcare will not be affected
Choosing to withdraw from a study should not affect your access to regular medical care or your relationship with your healthcare providers.

Your privacy is taken seriously when you participate in a clinical trial. Researchers must follow strict laws, ethical guidelines, and security procedures to protect your personal information.

Your information is kept confidential
Your personal details, such as your name, address and contact information, are kept confidential. In most studies, you are identified by a participant number or study code rather than your name.

Access is restricted
Only authorised individuals can access your identifiable information, including:

  • The study doctor and research team
  • Human Research Ethics Committees (HRECs), if required for monitoring
  • Regulatory authorities, if required for oversight or auditing

All are required to comply with strict privacy and confidentiality requirements.

Your data is stored securely
Study information is stored in secure systems, such as locked filing cabinets or password-protected databases. These systems are designed to prevent unauthorised access, loss, or misuse of your information.

Study results do not identify you
When study findings are shared or published, your personal information is removed. The results are reported using de-identified, anonymised data, so you cannot be personally identified.

Legal and ethical protections apply
Clinical trials must comply with privacy laws and ethical guidelines. In Australia, this includes the Privacy Act and national health research guidelines. All clinical trials must also be reviewed and approved by a Human Research Ethics Committee (HREC), which helps ensure your rights, safety, and privacy are protected.

You will be informed before you consent
Before joining a study, you will receive a Participant Information and Consent Form (PICF) explaining:

  • What information will be collected
  • How it will be used and stored
  • Who it may be shared with

You are encouraged to ask questions and make sure you understand this information before deciding whether to participate.

Expression of Interest

Still have questions? We’re here to help.

Browse our full FAQs page or contact us for more guidance and information.