‘Geography doesn’t have to be a barrier to taking part in research’

I work in the JDRF/Wellcome Trust Diabetes and Inflammation Laboratory. The lab has been doing a lot of bench science in the last 20 years and now they’re bringing a lot of the science learnt into human clinical trials. To do that you need some clinical staff to assist, I came in as part of the Experimental Medicine Group who help with these clinical studies.

As a research nurse, I help with the initial set up of the studies and manage much of the regulatory paperwork, liaising with the local ethics committee and the Research & Development office at Cambridge University Hospitals (CUH). I conduct patient visits and I attend public events to talk about our studies and the research that is happening here in Cambridge at the lab. One of the studies we are working on is looking at a potential new immunotherapy treatment for Type 1 diabetes.

What is Type 1 diabetes?

There is a lot of focus in the news on Type 2 diabetes, and a lot of people are unaware of the difference. Type 1 is an autoimmune disease, this means that your body is attacking its own pancreatic cells, whereas Type 2 diabetes has a different cause and is often linked to lifestyle factors.

How long have you worked here?

I’ve worked here for about two years. Before that for 15 years I worked for a commercial healthcare organisation in London. I did lots of things such as clinical nursing, repatriating patients via air ambulance and some IT project work helping design and implement electronic case management systems, but I decided to come back to Cambridge which is my home.

What do you do day-to-day?

Today I drove to visit a participant at home to take blood samples as part of a study visit. We’ve been recruiting a lot of people to our latest study who have Type 1 diabetes and have been relatively newly diagnosed. Type 1 diabetes can be diagnosed at any age so we have all age groups of adults on the study. They are otherwise fit and well and have busy lives, so we try and make the research accessible for them and arrange home and work visits to fit in with their lifestyles. I think there is an onus on us as researchers to make research accessible to all who wish to contribute and take part.

I come back and record all the study data. I will reply to website enquiries from people who are interested in taking part in our studies. We’re also trying to recruit healthy volunteers to lab studies so that we can access some blood as case controls to help the researchers with their work. There might be trips to the pharmacy to pick up study medications and planning for upcoming visits and schedules.

Why were you interested in this area of research?

I’ve always been interested in research, I completed a degree as a mature student in exercise physiology and I really enjoyed it. I did my own original research and published my dissertation, and I think that’s what got my interest.

It’s really nice to work with people from all ages and backgrounds; Type 1 diabetes can affect anyone and opens up a variety of people you could come into contact with. It’s nice to facilitate getting people involved in research. I find it really satisfying and they learn about their disease and what research we’re doing here in Cambridge.

Why is your role important for diabetes research?

Recruiting suitable participants to our studies and managing their participation to complete the study visits is of great importance. Facilitating this process and making sure the researchers get the data and samples they need is really important to the success of the research. A lot of studies don’t always manage to recruit enough participants in order to complete studies. Recruitment can have a big impact on the efficiency and speed of the research progression as well.

Why is diabetes research so important?

How long will your research take to help people who have diabetes?

The patients taking part in the current studies are helping to progress the research. It’s a very early stage to help us with the studies and it is likely to be a decade or more before there may be potential new treatments. Our work may not progress to a new treatment but it might help inform us about the disease and that might help point us to new treatments.

What feedback have you received from people taking part in your studies?

The people who take part are not doing it for their own benefit but for the sake of progressing the research. What many participants have found very helpful is the time they are able to spend seeing specialist clinicians on the study who can discuss their disease, and answer their questions. We can give the one-on-one-time they may not always get in routine appointments. We record study data carefully to look what their blood glucose levels have been and what the trends are. We often help advise how best to manage their Type 1 diabetes. People find it informative, not necessarily because of the study itself but because of the help with their disease management and having that contact with the team.

Do you do many drug trials?

Since I have been in post we have worked on two studies with Type 1 diabetes participants. One was to find out what the optimum dose of the drug we need to give; now we’re following that up with how often do we need to give it. It’s given as an injection, in a similar way people with Type 1 diabetes administer insulin. It’s familiar to participants and many can give it themselves which shows it’s something that people can manage.

What studies are happening at the moment?

The study we’re currently running is called DILfrequency it’s also an adaptive study. This means that the dose frequencies in the study changes as we progress. The data collected is analysed regularly and helps shape the remainder of the study. It helps us determine the optimum days between doses more efficiently. We are using a drug that is already licenced in some cancer therapies but we’re using very very small amounts to monitor its effect on some of the white blood cells in people’s immune systems.

How do volunteers help you with your research?

The participants are fantastic, everyone’s Type 1 diabetes is different and is managed in their own way, I actually personally learn a lot from them about tips and management.

Our current main study is for people with newly diagnosed Type 1 diabetes, but we’re always looking for healthy volunteers to participant – those without Type 1 diabetes. We use blood samples from non diabetics as controls for much of the research in the lab. It’s invaluable to us and helps us to progress the research and compare to the samples from the diabetic participants.

How can people be involved in your research?

We recruit participants by different means, sometimes from other hospitals. We have very good links with the clinics here at Addenbrooke’s hospital. However the most useful recruitment tool is the internet and our study website. Social networking is great and a lot of people hear about our studies from the internet. As a healthy volunteer you can register your interest or join the National Institute for Health Research (NIHR) Cambridge BioResource. Being known as a ‘healthy volunteer’ is perhaps a little misleading, it doesn’t mean you have no health conditions, it means you don’t have Type 1 diabetes in this instance.

Can only people in Cambridge take part in your diabetes study?

No we have people from London, Ireland, Scotland  and we’ve even had people come from Europe to take part. Geography should never be a barrier to taking part in research.

Why should people take part in research?

I think it can be interesting for people. If you’re a healthy volunteer without any medical conditions you can learn about science and the research process. If you are a patient with a particular condition it’s a great way to learn and understand more about it and what research is being done to help. You can learn other things not necessarily what the research is trying to find. You might learn something about your health just by taking part. Research is important to help us find the most effective and efficient treatments for people.

What information can you give for people who want to be involved in clinical trials?

If you take part in a  trial of new treatments there are often risks involved, but most things we do in life are risk associated . The most important thing we can do as research staff on any study is to make sure people are fully informed of what those risks might be, and let them make them an impartial decision about whether they wish to take part. The benefit may outweigh the risks and that is a decision only the participant can make. We will make sure you have all the information to make an informed decision. We can give written information, talk to you and give time to consider the information.  We encourage you to speak to others if it helps, before making a decision.

Is all research drug trials?

No not at all, we have studies where we’re asking people to donate a specimen of blood and answer a few questions about themselves; they don’t need to do anything else. It depends what the researcher is looking for but they could be looking at the effect of drugs in different blood cells within the lab.

Can only people with Type 1 diabetes take part in your studies?

No, it all depends on the study. With our studies we recruit people directly with and without Type 1 diabetes and sometimes people with other autoimmune disorders.

If people want to get involved in research, who should they contact?

There are public databases on the internet and study websites where you can find out what trials are going on, that’s a really good place to start. If you’re a patient, your local health care provider is likely to know what studies are happening at the moment. Often using the internet you can contact study teams directly to ask about taking part.

What do you like to do in your spare time?

I love cycling and about every two years organise a European cycle adventure for a group to raise money for charity. The last one we did was last May when we rode from London to Cannes to raise money for two charities. I tend to blog the rides too, but rather than ask people to sponsor me repeatedly I would rather give my time organisingrides for others to raise money and to see them complete a challenge they might not have thought themselves capable of.

We raised almost £10,000 with the last ride. This year will be about riding for pleasure with a few trips to France to ride up some of the big Tour Dr France mountain climbs.

What would be your dream job?

To be paid to ride my bicycle every day, I love cycling so I would just love to cycle all day everyday

For more information regarding the studies Jane works on you can email or call 01223 762327