An ideal match - scientists finding research volunteers
From the spring 2015 issue of our Care and Cure research magazine, find out more about how scientists are being matched with volunteers to help on their research projects.
Over the past decade online dating has become a big business. Busy singles are unable to meet enough new people who are also single and meet long lists of desired characteristics. Matches can be made more easily and efficiently by computer algorithms searching through details of people looking for one another in a database. This idea has been so successful that it is now being used to help scientists find research volunteers.
The right people
Advances in technology allow researchers to study diseases like dementia in petri dishes, in animals and even in computers. These have increased our understanding but ultimately new discoveries need to be tested in humans.
Studies and trials involving people rely on potentially thousands of volunteers taking part, which could involve taking a new drug, changing lifestyle or being observed over time. However finding the right people in the right place with the right condition can be tricky.
In the past, participants have been recruited via memory clinics or by placing adverts in GP surgeries and the local press. Finding the right people is often a lengthy and time-consuming process.
The ELAD study will involve carrying out a large number of brain scans on people with Alzheimer's disease who are taking liraglutide to see if it makes a difference to their brain structure and prevents the loss of nerve cells. Importantly the researchers will also assess whether the drug prevents memory loss and improves people's quality of life.
Dr Paul Edison from the Imperial College Memory Research Unit in London:
'We first had to find people who matched our inclusion and exclusion criteria. Then we had to find out if those people were willing to take part and then check that they weren't too advanced in their disease to be able to give consent,'
Edison's team is currently conducting a study known as ELAD, which tests whether a drug used to treat diabetes could also be effective for Alzheimer's disease (see bottom of the article). This is one of the first studies to recruit participants through a new matchmaking service called Join Dementia Research (JDR), which aims to make the recruiting process much simpler.
'JDR has been very helpful because people are effectively pre-screened. Patients go on and register their details to see if they match any study's requirements - so you already know if they might be a good fit. It also provides us with people who are interested in research, so half the battle is over,'
'It brings the ideal patients closer to the researchers.'
The power of information
Join Dementia Research has been developed by the National Institute for Health Research working in partnership with Alzheimer's Society and Alzheimer's Research UK. The service aims to make it easier for people to take part in research by having studies listed in one place and screening based on eligibility criteria.
Dr Melanie Dani, a clinical research fellow in Edison's team, leads on recruitment to another study on inflammation in the brain. She explained the steps involved:
'We put our criteria into the JDR website and that finds people who only match our study information. We can access their contact details and also know how they'd prefer to be contacted. Usually we send them an email first. We then screen them on the phone and send them further information if they are interested. Then we follow up and if they agree to take part, bring them into our system. It's a more direct route to patients, so a much faster process.'
Another advantage is that, once participants have been matched, researchers can access their details in one place, as Dani described:
'JDR contains all the information we need for enrolment to a study, people's NHS numbers, their GP details, their consultant at a memory clinic and results of medical tests - all the information that we sometimes struggle to obtain. For example, we're now looking for people with a particular range of scores on the memory tests used routinely in research. A person's score is usually included in their medical records, so we can find out straightaway if they are eligible on that basis.'
Studies can often struggle to recruit enough patients, whether that is due to strict criteria or the difficulty of taking part. Dani's study is aiming to recruit people with mild cognitive impairment.
'These are the people who are a bit worried about their memory but otherwise are functioning very well. It's a tiny window. Not everyone seeks medical advice at that point, so it's not often officially diagnosed.'
The ELAD study also posed some challenges for recruitment, as Edison explained:
'There's a lot involved in taking part, including 14 visits to local sites and two visits to London for brain scans. The new drug also has to be injected daily, like insulin. People tend to be more hesitant about that than taking a tablet.'
However Join Dementia Research has helped overcome these difficulties, providing willing and enthusiastic volunteers.
'It's an excellent source of volunteers. They also know about our studies and have expressed an interest in taking part.'
said Edison, and Dani agrees:
'The people who have already signed up are so well informed and interested in our research. They know our studies are extremely important to help us understand the disease.
'I think it's great that a lot of patients are told about JDR at the memory clinics and through the charities. It means everyone has access wherever they are, and can easily find the studies suitable for them.
'I've enrolled five people. Five more are booked to be enrolled and I'm in contact with dozens more. I get two or three new names every day. It's been great!'
For further information about Join Dementia Research visit www.joindementiaresearch.org.uk
The Evaluation of Liraglutide in Alzheimer's Disease (ELAD) study
Alzheimer's disease and diabetes are strongly linked. People with Type 2 diabetes are more likely to develop dementia. Research has shown that there appears to be a common disease mechanism operating in both, probably linked to the hormone insulin.
Type 2 diabetes is caused by cells in the pancreas becoming resistant to insulin. A similar resistance is seen in the brain's nerve cells in people with Alzheimer's disease. Treatments for Type 2 diabetes reduce the effects of insulin resistance and so this opens up the possibility that the drugs used to treat diabetes might also help people with dementia.
Liraglutide is one of the drugs used to treat diabetes. Tests in animal models of Alzheimer's disease have already shown promising results. Liraglutide appears to decrease signs of Alzheimer's in the brain and increase the number of connections between nerve cells. The question is whether it can do the same thing in people. If effective, it could be available for people with dementia in a couple of years.