Patients and the public

Local Clinical Research Networks
- North West London

Useful links

People in ResearchThe People in Research website helps research organisations and researchers find members of the public to get involved in their work by advertising opportunities.

Get Involved

There are many ways you can get involved in the research taking place in North West London.

You could take part in a clinical trial - either as a healthy volunteer or as a patient.
You can sign up to Discover, the research register for North West London.
You can help us Beat Dementia by signing up to Join Dementia Research.
You can help our partners at NHS Trusts, universities, industry and charities decide what to research and what to fund.
You can help research design their studies and make sure they are "patient friendly".
If you have taken part in a study, you can share your experiences and encourage others to do the same.
You can become a Patient Research Ambassador.
You can use the Be Part of Research website to easily search for and identify relevant clinical trials to take part in.

If you would like to find out more about opportunities in North West London please email Danielle Neal at danielle.neal@nihr.ac.uk or call 020 3313 4012.

Real Life Stories

Below some people who have taken part in research in North West London have shared their experiences. If you would like to share your story and wish to find out more please download this guide or contact our Patient and Public Involvement Manager Danielle Neal.

Clea St Jean, a patient at Imperial College Healthcare NHS Trust.

Clea's Story

Someone is told they have diabetes every two minutes in the UK. Clea St Jean, a Bed Manager at Imperial College Healthcare NHS Trust, knows exactly how shocking this diagnosis can be.

“I sort of froze for a minute”, Clea recalls. “I sat there trying to process this news”. She was diagnosed with type 1 diabetes.

Diabetes causes blood sugar levels to become too high. There are two main types, type 1 and type 2. There are some other rarer types too.

Clea was coping with her diagnosis and regularly checking in with her diabetes team. She was attending one of her appointments at Charing Cross Hospital, part of Imperial College Healthcare NHS Trust, when she was invited to take part in a research study. An offer she accepted.

The MY DIABETES study was set-up by Dr Shivani Misra. It looks at the differences between young people with diabetes in different UK ethnic groups. Dr Misra said: “The aim is to describe in detail the kinds of diabetes people have when they are diagnosed before the age of 30.” Initial findings show that definitions of type 1 diabetes don’t agree across ethnic groups, suggesting a need to change definitions.

The study involves taking regular blood tests. For Clea, this was originally once every three months but now once every six. This is not a major inconvenience, especially considering the benefits research can bring. “My thinking was that if I participated in this, and they found something, that it would assist someone else”, Clea said.

But taking part did more than help others. It identified the fact that Clea had been misdiagnosed. Blood tests revealed that she had a rare type of diabetes called MODY (maturity onset diabetes of the young). This type is inherited and caused by a gene mutation.

Clea’s clinics were transferred from Charing Cross Hospital to St Mary’s Hospital, where she received more specialised and appropriate care. Clea recognises how valuable her research experience has been in helping her to better understand her condition. She said, “My consultants would be treating me as a patient with type 1 diabetes, not knowing that is not just this that I've got, it's one of the rare types of diabetes.”

“It's life changing because that particular decision that I took, I know led me to finding the accurate diagnosis. And now I'm obviously going to get the right treatment.”

By taking part, Clea has allowed researchers to develop a better understanding of diagnosing diabetes accurately. This is important to ensure patients receive the appropriate treatment.

Clea is in no doubt that her decision to take part in research was the correct one for her. And she thinks others should take part too. “I would advise it definitely, 100% recommend it”, she said. “My team at Imperial College is amazing.”

“They know what they're doing, they know exactly how to help you. So it is it is amazing and I would recommend it to anyone”.

Photo of Greg, who took part in a study.

Greg's Story

Greg Farkas, from Leyton, East London, found himself at risk of contracting TB when his housemate tested positive for the infection. TB can spread easily from tiny droplets in coughs and sneezes. Greg was soon tested and thankfully received the all clear. But that wasn’t the end of his journey.

A research nurse from St Mary’s Hospital, part of Imperial College London NHS Trust, approached Greg to ask if he wanted to take part in a clinical trial. Testing negative for TB after being exposed to it made him an ideal candidate for a study looking at the risks if catching the infection.

The study, called Risk Stratification of Tuberculosis Infection, is supported by the Clinical Research Network North West London.

Greg agreed to take part and has had a positive experience so far. Greg said: “The whole process was really streamlined and good so I never felt that I’m in the wrong hands.

“It’s always reassuring to have a contact who is more knowledgeable and also that you can approach with questions.”

The trial requires Greg to give blood samples at regular intervals. He will continue to do this over the next 18-months with tests once every six months. These appointments have caused little inconvenience to Greg, taking only two hours with travel included.

Greg had little knowledge of TB before taking part in the study and recalls how he first felt after discovering he needed to be tested. “I think the first reaction was fear”, he said. This is no surprise after recalling a documentary he once saw on infections. “It terrified me that you could just contract something and it can kill you”, he said.

Although TB is a serious condition, deaths are rare if treatment is completed successfully. But more research is needed to gain a better understanding of the infection. This convinced Greg to take part in the trail.

Greg said: “Maybe this could help the research team to get a little tiny step closer to find something certain.

“I would love to see what the researchers come back with.”

Despite Greg’s positive experience, there have been some challenges. “I had a bronchoscopy, which was quite terrifying”, he said, recalling the procedure of inserting an instrument into the airways to gain an internal image. But he is confident the trial will be worthwhile and provide positive results.

He said: “On a personal level it’s definitely rewarding to take part in this research and hopefully the research team will find something useful as well.

“They can go ahead and solve bigger puzzles and hopefully help on a global scale because we are not talking about just local incidents when it comes to TB. And considering this, investing in a few hours or a maybe a few days here and there, it’s not a big price to pay. So I would definitely recommend to people to take part in research.”