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More than 37,000 volunteer in Oxford health research studies


New figures show more than 37,000 participants volunteered for health research studies supported by the National Institute for Health and Care Research (NIHR) in Oxfordshire in the 12 months from April 2022.

Some 23,846 participants took part in 545 studies supported by the NIHR Clinical Research Network at Oxford University Hospitals (OUH) NHS Foundation Trust, up from 17,527 in the previous 12 months.

A total of 1,703 also volunteered in 46 studies at Oxford Health NHS Foundation Trust, while a further 11,575 participants took part in 210 studies in the community, including trialling possible treatments for COVID-19.

The NIHR Clinical Research Network helps researchers make studies happen in the NHS, public health and social care. In England, 952,789 people took part in NIHR-supported research in 2022/23.

As well as patients being offered the opportunity to participate, healthy people can also take part so results can be compared to those with a medical condition.

Among the studies participants volunteered for in the 12-month period were:

  • a drug to reduce the risk of heart attacks and strokes in people with vascular disease
  • how best to investigate if a patient with a severe headache has had a brain haemorrhage
  • investigating the link between immune system problems and psychosis, a condition that can cause hallucinations or delusions
  • a system which monitors trends in people who self-harm to provide better care.

Screening for spinal muscular atrophy

 Grace Johnston, from Lewknor in Oxfordshire, volunteered daughter Lyra to take part in a screening study for spinal muscular atrophy (SMA) at OUH's John Radcliffe Hospital when she was five days old.

The study, Newborn Screening for SMA, involves testing for SMA in the blood that is already taken as part of a routine test offered to all newborns in the UK to screen for other conditions.

SMA is a rare genetic condition that makes the muscles weaker and causes problems with movement, including weak arms and legs, difficulty sitting up or crawling and breathing difficulties. Symptoms become more severe over time. There is no cure but gene therapy treatment can be given if detected before three months old to slow development of the condition.  

Grace, who gave birth in April, said: "Previous to getting pregnant with Lyra, I had suffered a miscarriage. I think my anxiety about the baby's health was a lot worse because of the previous loss. I felt fortunate that the John Radcliffe Hospital in Oxford included the SMA screening and knew that having it would relieve me of one less anxiety."

Grace, 30, a strategist in IT, said: "The SMA screening was so easy. It didn't feel like an additional test as it comes from the same blood that would have been taken and checked anyway."

The study revealed Lyra tested negative for SMA. "For me, the biggest benefit was knowing that if she did have it, it was treatable. Knowing I might be able to protect my child from a very different type of lifestyle boosted my confidence as a first-time mum."

Ten-year involvement in haemophilia trial

 Eloise Clark’s son Jacob joined a haemophilia study in 2013 aged five. The study assesses a blood-clotting drug as a preventative treatment for life-threatening bleeds in children.

Haemophilia B is a blood clotting disorder where injured blood vessels cannot heal normally. This can result in bleeds inside the body as well as from the skin, which can be fatal if they are not stopped or if they occur in vital organs such as the brain.

Eloise, a teaching assistant for children with special needs, said: "When Jacob started primary school, his bleeds got worse and more frequent. He'd suffered three bleeds in five months, and it was then that the doctors suggested the trial to give him injections of the clotting factor that his body needs."

The study, run at the John Radcliffe Hospital, offers participants a drug which is injected into a vein in the arm once a week instead of injections of a different clotting drug every three days, which is the standard care.

Eloise, of Aston Clinton, near Aylesbury, in Buckinghamshire, said: "The study had completely changed Jacob's life and I don't know what his life would be like if he wasn't on it. He has broken his arm twice and didn't need any additional treatment for bleeds. He hasn't had any bleeds since he has been on the trial and can't really remember what they are like."

When the trial finishes in October, Jacob will be prescribed the drug.

Jacob, who recently completed his GCSEs, said: "I'm really grateful for all the care and treatment I've had from my haemophilia medical team. Being part of the trial has been a great experience. The treatment meant I could experience my childhood like any normal boy." 

Increasing numbers of patients within Oxfordshire are benefiting

Professor Adrian Banning, Director of Research and Development at OUH, said: "These annual data show the breadth of medical research activity that is happening in Oxford, both in the hospitals and the wider community.

"Recruitment to medical research is recovering following the pandemic and increasing numbers of patients in Oxfordshire are benefiting from participation in these studies.

"Enhanced collaborations with Oxford University, Oxford Brookes University and Oxford Health, together with the renewal of two new Biomedical Research Centres, which develop scientific breakthroughs into potential new treatments, diagnostics and medical technologies, will hopefully maintain this progress into the next decade."

Bill Wells, Head of Research and Development at Oxford Health NHS Foundation Trust, said: "Over the last year Oxford Health continued to see the trend towards more complex studies. This is where our relationship with Oxford University Hospitals is becoming more important because of our need to access externally provided services such as scanning and blood analysis. 

"Going forward collaborations with Oxford University Hospitals, Oxford Brookes University and Oxford University via the Oxford Joint Research Office will provide further efficiencies and opportunities to set up studies across the county."

Health research saves lives

Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives.

The NHS, public health and social care supports research by giving patients opportunities to take part in trials. Healthy people can also take part so results can be compared to those with a medical condition.

Patients are also encouraged to ask their doctor or health professional about research opportunities and search for and sign up to be contacted about trials at Be Part of Research