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Around three million people in the UK have kidney disease

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Using the findings of a recent survey researchers are hoping to encourage more people to volunteer to take part in clinical trials.

Despite 85 per cent saying they want to help the NHS find better treatments, only 14 per cent of people living in the UK have ever taken part in a clinical trial.

The National Institute for Health Research (NIHR) is hoping to breakdown barriers and dispel some of the myths and mystery surrounding clinical trials.

Simon Denegri, NIHR National Director for Patients, Carers and the Public, said: “Research has played a massive part in transforming the healthcare that patients have access to today – from the discovery of penicillin to the production of the contraceptive pill – and it remains one of our best chances to develop the care and treatment we receive in the future.”

“It’s encouraging that so many people support finding ways in which the NHS can provide better treatments, but we urgently need more people to get involved in clinical research if we want to continue offering our patients world-leading healthcare.”

The survey reveals a number of public misconceptions:

  • 23 per cent think clinical trials are only for people who are ill;
  • 58 per cent think children cannot take part in trials;
  • 38 per cent think all trials involve testing a new drug;
  • 66 per cent think you have to be invited to participate in a trial;
  • 27 per cent think trials only take place in hospitals;
  • 40 per cent do not realise that most hospitals in England undertake trials; and
  • 40 per cent do not know that patients and the public can help to design trials.

It also revealed a number of regional differences. Only seven per cent of people have participated in a trial in East Anglia and nine per cent in the West Midlands and Yorkshire and the Humber. This is in stark contrast to Newcastle, where nearly one in four (23 per cent) have taken part in a trial.

Over half (56 per cent) of adults said concerns about getting a treatment that was not safe or had side effects would stop them from volunteering. But separate data indicate that the overwhelming majority of patients who participate in research have a positive experience (87 per cent) and would be happy to take part in another study (83 per cent).

A third of survey participants said they had never seen any information on clinical trials. For those who had, one in five said it had been in a GP’s surgery and a third said it had been in a hospital setting. This suggests that better access to information could help to increase participation.

In addition to helping to recruit patients and healthy volunteers onto clinical trials, the NIHR provides many other opportunities for people to become involved in research. Simon Denegri said: “There are a number of ways people can get involved, from speaking to their doctor or healthcare professional about taking part in a trial, to suggesting a research topic or helping to design a study. The NIHR will continue to forge strong links with hospitals and GP practices across the country to expand these opportunities for patients, carers and the public.”

According to the survey, seven in ten adults think the public should have a say in decisions around what research receives funding.

The NHS celebrates its 70th birthday this year. Asked what should be the NHS’s top three research priorities for the next 30 years, 68% of survey respondents said cancer, 58% said Alzheimer’s or dementia and 32% said genetic diseases such as cystic fibrosis. Other priorities highlighted were diabetes (24%), bone, muscle and joint problems (17%) and depression (16%). One in ten selected HIV / AIDS and 14% obesity.

Stephen Burgess, a retired Methodist Minister, is taking part in a rare cancer trial after being diagnosed with a condition called Lynch syndrome.

He said: “We all benefit, or hope to benefit, from medical research and we wouldn’t unless people sign up to take part in it. It benefits an individual to do it because you have an increased chance of heading off a cancer and it’ll hopefully help other people.”

Find out more about getting involved in renal research.

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