Linking researchers with ideal patients
The team at the Imperial College Memory Research Unit, led by Dr Paul Edison, is researching Alzheimer’s disease and mild cognitive impairment (a midway stage between normal age-related memory loss and the more serious decline of dementia). The team use PET and MRI brain scans to explore the mechanisms that lead to dementia, with the ultimate goal of finding better ways to diagnose and treat the condition. They were one of the first groups to develop imaging technology to detect amyloid in the brain.
Currently, the team is conducting several studies. One study, funded from Alzheimer’s Research UK, is looking at neuroinflammation to try to explore the underlying disease processes in Alzheimer’s. This study, along with another study of Dr Edison’s investigating new treatments, is currently recruiting volunteers. ‘Join Dementia Research’ (JDR) has made an enormous difference. Recruitment has been faster and easier than ever before.
“JDR is an excellent way of recruiting patients, as it matches the study with appropriate patients. It’s an excellent source of volunteers,” Paul reported. “Because patients have already been on the JDR website, we have their details. They also know about our studies, and have expressed an interest in taking part. So it brings the ideal patients closer to the researchers”.
Finding the right patientsIn the past, patients have been recruited via memory clinics, or by placing adverts in GP surgeries and the local press. Finding the right people has often been a lengthy and time-consuming process. “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”, explained Paul. “JDR has been very helpful because people are effectively pre-screened. People 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”.
Dr Melanie Dani, a Clinical Research Fellow on the team, has been using the JDR service for three months. In her experience, “It’s been great! 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”.
Melanie leads on recruitment to the neuroinflammation study. 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”.
Getting the right information
Another advantage of JDR is that, once approved, researchers have easy access to patients’ medical records, as Melanie described, “Part of 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”.
The team had some concerns about whether they would be able to recruit to the neuroinflammation study. “It’s an observational study. There’s no treatment being tested, so there are no direct benefits to the patients taking part. We’re also recruiting people with only 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”, explained Melanie.
However, JDR has helped overcome these difficulties. It has proved to be a valuable source of willing, enthusiastic volunteers. “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”, Melanie said. “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”.
- You can sign up to ‘Join dementia research’ today at www.joindementiaresearch.nihr.ac.uk or phone our Dementia Research Infoline on 0300 111 5 111 and we can register you over the phone.
This is a cross-post with the National Institute for Health Research
About the author
Zara Qadir is Communications Manager at the NIHR Clinical Research Network. She works with the 'Join dementia research' (www.joindementiaresearch.nihr.ac.uk) team to ensure that the public are aware of the opportunities to get involved in dementia research. After a degree in Biological Sciences and a Masters in Science Communication, Zara has worked across a number of fields as a science and medical writer, and has a keen interest in talking and writing about scientific research.