From stillbirth and healthy ageing to drug trials and the genetic basis of common diseases, the University’s world-class research relies on the thousands of Cambridge residents who volunteer for research studies.
The Newsletter regularly covers major scientific, technical and medical advances made by Cambridge researchers: results are described; methods mentioned; academics quoted; and funders name-checked.
But what about the subjects – those anonymised and data-protected individuals who play such a vital part in the scientific process? Who are they, what kind of studies do they volunteer for, and why do they bother?
Dr Ian Wilkinson, Director of the Cambridge Clinical Trials Unit, believes that where drug trials are concerned, volunteers have three primary motives. “If you’re seriously ill and think you may benefit from a trial, that’s a strong motivator,” he says.
“There are a lot of people who do it for altruistic reasons, and they tend to be older people with time on their hands. And for phase 1 studies [which are done to work out what the body does to a particular drug] money is an important motivator. If it weren’t, then people wouldn’t get paid for doing it.”
Among those who feel volunteering in trials might help their health are Andrew Scutt and Charles Payne, both part of the British Heart Foundation’s Pathway project. Led by Professor Morris Brown, and involving more than 1,000 volunteers across eight UK hospitals, Pathway is looking for new ways of treating drug-resistant high blood pressure.
According to Mr Scutt: “I was keen to take part in a trial that might improve my own health, and as I have a family history of hypertension being part of this study might help my kids in the future.”
Pathway volunteers record their own blood pressure at home and attend their local clinic every six weeks for other tests. “My involvement is minimal: it’s just like going in for a periodic MOT,” says Mr Payne, whose father and grandfather both died of heart attacks.
“I wanted to find a way to reduce my blood pressure as everything else has failed. I’m a runner, and I want to finish running on my own terms, not my body’s.”
Despite the benefits of being involved in clinical trials, recruiting volunteers is challenging says Dr Wilkinson: “The main reason why most large trials fail is because they can’t recruit enough people. It’s very difficult, and volunteers are vital – without them we couldn’t do a thing.”
Recruiting volunteers is a challenge for many investigators, not just those trialling drugs, which is why the Cambridge research community has developed two sizeable volunteer pools for researchers to use.
Set up more than 20 years ago, the Medical Research Council Cognition and Brain Sciences Unit’s (MRC-CBU) volunteer panel now has several thousand members. Each week around 100 panel volunteers take part in MRC-CBU studies of attention, emotion, memory and language, and last year helped researchers develop the battery of tests for a major new Cambridge-wide collaborative project on healthy ageing, Cambridge Centre for Ageing and Neuroscience (Cam-CAN).
A population-based study of 3,000 people aged 18 to 88 years, Cam-CAN is recruiting volunteers via GP surgeries, and the MRC-CBU’s Dr Sharon Erzinçlioğlu is one of the researchers who will be testing them over the next three years.
“The crucial part of the project is that we will have brain imaging to match to participants’ performance on the computer and pen-and-paper tasks to see how brain changes across the life-span relate to cognitive changes. Volunteers were absolutely crucial for this research, and we couldn’t have set up Cam-CAN without panel volunteers coming in to help us develop the tests we’re going to use,” she explains.
The Cambridge BioResource (CBR) is a more recent innovation. Set up by the University of Cambridge and the MRC in 2005, the CBR is one of only two such initiatives in the UK. More than 9,500 volunteers have joined the CBR, each donating DNA via a blood or saliva sample. Researchers then use this DNA data to find volunteers with a specific genetic make-up and 3,500 volunteers have already taken part in eight different studies aimed at identifying interactions between our genes, the environment and common diseases.
CBR Coordinator Sarah Nutland explains: “We know that many genes are associated with common diseases like diabetes and cardiovascular disease, but we don’t know what these genes do. By offering researchers pairs of age- and gender-matched volunteers, carrying different versions of the genes of interest, the Cambridge BioResource allows us to unpick the function of these specific genes – it’s enabling research that otherwise would not be possible.”
A University researcher before being elected MP for Cambridge last year, Julian Huppert recently joined the CBR’s volunteer panel. He told the Newsletter: “My experimental work used small pieces of DNA; I could order them and they would arrive in the post, but that’s a luxury not available to many researchers. Cambridge needs fantastic research leaders but it also needs volunteers who are prepared to be part of their studies.”
Like Mr Huppert, Joy Dring believes volunteering for biomedical studies makes a difference. Part of both the CBR and the MRC-CBU panels, she says: “It’s like being a blood donor. It’s a pity more people don’t do it, give a bit back. It’s no problem – nothing unpleasant – and you always have a choice about whether or not to go along when they call you.”
Fellow MRC-CBU volunteer Fenella Leigh agrees: “They pay a small honorarium but that’s not the main reason why I volunteer. Since I started volunteering ten or 12 years ago I’ve become really interested and now that I’m retired it's nice to get out.
“One study I did was about early-onset Parkinson’s disease. I had to do a series of brain-hand coordination tests, and these were repeated while I was in an MRI scanner. In the waiting room I met the wife of a patient and realised that my volunteering was having a real impact on people with diseases like Parkinson’s. It really hit home,” she says.
Understanding what motivates volunteers can also help boost researchers’ recruitment rates. Three years in to the Pregnancy Outcome Prediction Study (POPS), which is examining new ways of identifying women at risk of stillbirth and pre-eclampsia, Professor Gordon Smith from the University’s Department of Obstetrics and Gynaecology has so far recruited 2,700 of his target of 5,000 women in their first pregnancies.
As well as providing several blood samples during their pregnancies, participants have two extra scans at 28 and 36 weeks. The purpose of the scans is to make a series of measurements of the baby’s size and blood flow. But mothers are often very positive about the opportunity to see their baby in the womb and Professor Smith believes this appeals to his volunteers. He says. “Ultrasound is one of the key ways of studying the baby. But it is also attractive to mothers as they can see their baby and obtain pictures at the time of the scan.”
POPS volunteers agree. According to one: “As it’s my first pregnancy I thought seeing more scans would be interesting – seeing the baby and getting more pictures. And I hope what they learn from us will be useful for future mums-to-be.”