Joining rare disease research

What type of research could I take part in?

There are many different types of research that patients can help with, from projects aiming to look for common causes of a condition between patients through to more advanced research where a new treatment identified in earlier research projects is being tested to confirm a benefit to patients.

The sort of things that might be asked of you as a patient joining in with research could include:

  • Answering questionnaires
  • Taking part in interviews
  • Giving researchers permission to look at your medical records
  • Giving a blood or urine sample
  • Receiving a new treatment

You should always remember that it is your choice to take part in a research study and if you do decide to take part, you can change your mind at any time.

How else do patients help researchers?

As well as participating in research, patients and members of the public also help researchers by lending their opinion, expertise and external viewpoint about a study before it ever involves any patients.

You could be involved in meeting with researchers and talking about their ideas, giving your opinion on information that will be given to patients or being actively involved in driving research into rare disease forward.

If you would like to learn more about getting involved in research as a patient representative, then please get in touch with Emma Hughes from Genetic Alliance UK: emma@geneticalliance.org.uk

How are research projects regulated?

All research projects involving patients have to meet very strict guidelines and cannot go ahead without approval from an ethics committee or other heath research authority. Any study involving a treatment being given to patients will also have to be approved by the Medicines and Healthcare products Regulatory Agency.

For further information please visit NHS Choices webpage.

What sort of projects can I find?

Wales Gene Park’s gateway aims to bring together information about rare disease research projects which patients in Wales are encouraged to join in with and support.

We are continuously updating information to ensure relevant and current studies are included, but may sometimes miss something or may not yet have had a chance to add the very latest information – please bear with us, we’re only human!

If you would like to get in touch about any of the information on the gateway, please email us: RDGateway@cardiff.ac.uk

I haven’t found anything in your database, where else can I look?

The Wales Gene Park database aims to bring together information about rare disease research for Welsh patients.  If you have not been able to find what you are looking for on our gateway, here are some other websites that contain wider information about medical research and drug trials you might find useful.


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