Understanding research

Research doesn’t have to be
complicated. We’ll walk you through it.

Taking part in research can raise a lot of questions, especially when you’re already managing a rare disease. This page explains what research actually involves, what you might be asked to do, and what your rights are. No jargon, no pressure.

Types of research

What kinds of research does RDC work with?

Not all research involves treatments or medications. RDC works across three broad types of study, each with a different focus and different level of involvement for participants.

Clinical trials

Studies testing new treatments, medications, or ways of managing a condition. These are carefully regulated and always voluntary.

Human factors studies

Research into how patients interact with medicines, devices, or healthcare tools, helping make them easier and safer to use.

Patient experience research

Studies that explore what it’s like to live with a condition – your symptoms, daily challenges, and what matters most to you.

What to expect

What does participation actually look like?

It depends on the type of study, but here’s a typical journey if you were to express interest in a research opportunity through RDC.

You hear about an opportunity

You may hear about a research opportunity through our newsletter, or directly by email if you have opted in. Each opportunity will include details about the study so you can decide whether you would like to find out more.

You express interest

If you’re curious, you can register your interest. This simply means you’re open to hearing more. It doesn’t commit you to anything.

You find out if you are eligible

Each study has specific criteria, such as age, diagnosis, or location. A brief screening process helps determine whether the study is a good match for you. This is usually a short questionnaire or a conversation with the research team.

You receive full information

The research team will share full details – what the study involves, how long it takes, what you’d be asked to do, and any potential risks or benefits. You will have time to ask questions and decide. You can say no at any point.

You take part - on your terms

Depending on the study, participation might involve visiting a research site or clinic, completing questionnaires, or using a device at home. The research team will always explain exactly what is involved before you agree to anything. You can withdraw at any time without it affecting your care.

Your time is valued

RDC only works with studies that compensate participants. Any compensation will always be made clear before you agree to anything.

Your rights

What protects you as a participant?

Participation in research is always voluntary. You have clear rights throughout any study.

Properly reviewed and regulated

Studies shared through RDC are conducted in accordance with applicable regulatory and ethical guidelines in the countries where they take place.

Always voluntary

No one can pressure you to participate. Your care will never be affected by your decision to take part or not.

Your data is protected

Research studies must follow strict data protection rules. Your personal information cannot be shared without your consent.

Right to withdraw

You can leave a study at any point, for any reason, without explanation. This is a fundamental right of all research participants.

RDC never sells your personal information. We only collect the minimum information needed to match you with relevant opportunities. Your data is stored securely and never shared without your consent.

Common questions

Frequently asked questions

Will I be used as a guinea pig?

No. Ethical research is designed to answer specific scientific questions, not to experiment on people. You will always know exactly what is involved before agreeing to anything, and you can say no at any point.

Will it cost me anything?

No. RDC only works with studies that compensate participants. Any compensation will always be made clear before you agree to anything.

How will my data be used?

Each study will explain exactly how your data is collected, stored, and used before you agree to take part. For how RDC handles your information, see our privacy policy.

Does joining the RDC community mean I have to take part in research?

Absolutely not. Participation in research is always a separate, voluntary decision.

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