Number of people taking part in life-changing research reaches almost one million

It has been another successful year for participation in health and care research, with almost one million participants across England taking part in NIHR research in 2022/23.

 

Over 100 people in England were recruited every hour to take part - that’s enough people to fill Wembley Stadium over 10 and a half times.

 

Participant numbers were up on pre-pandemic levels*, an additional 1,300 people a week took part in research, that's over an extra 220,000 people during 2022/23.

 

The data relates to NIHR’s Clinical Research Network (CRN) portfolio studies.

 

 

One patient’s experience of sickle cell disease pregnancy trial

One of the people helping to make breakthroughs possible is 34-year-old mother of one, Dr Ore-Ofe Ajeigbe. She took part in the TAPS2 feasibility trial at Guy’s and St Thomas’ NHS Foundation Trust. The study’s aim was to evaluate the efficacy of a sickle cell treatment for pregnant women and their unborn babies. The NIHR CRN South London supported the TAPS2 study by recruiting volunteers.

 

There are over 100 pregnancies in women with sickle cell disease annually in the UK. Pregnancy in women with sickle cell disease is considered high risk because sickle cell complications may increase due to the added pressure of pregnancy. This can result in illness and in turn, frequent hospital and critical care admissions.

 

Dr Ore-Ofe Ajeigbe explains:

 

“Sickle cell disease is basically when the body does not have enough red blood cells to carry oxygen around the body, resulting in a painful sickle cell crisis. The condition can be excruciating, especially in the winter. Sometimes I can manage it at home by myself, other times I have needed to be hospitalised.”

 

 

The TAPS2 feasibility study randomly allocated pregnant women with the condition to either regular planned exchange blood transfusion or normal care with transfusions only performed if they become unwell due to effects of sickle cell disease.

 

Ore-Ofe was randomised to receive blood transfusions, she had regular blood tests before having her blood transfusions as part of her involvement in the TAPS2 feasibility trial.

 

She explains:

 

“I would go into hospital for blood tests and two days later, I would go in for my transfusion, which took two hours each time. For the procedure I had to lie on a bed; in one arm my blood would be coming out and in the other arm, the donor’s blood enters my body at the same time."

 

“I had monthly appointments with the consultant at the hospital and in addition, the research team contacted me after each appointment”.

 

 

Her final blood transfusion was in October 2022 and she gave birth to her healthy baby girl IseOluware in November 2022.

 

Ore-Ofe said:

 

“I was very nervous about managing my first pregnancy with sickle cell disease, and I had concerns about being part of a trial during this crucial period of my life. I was worried about the impact it would have on my unborn baby, but I asked a lot of questions before participating in the trial and was satisfied with the reassurances I received.”

 

“As a result of the trial, the frequency and intensity of sickle cell crisis was reduced, so I didn’t experience pain. I didn’t need to be hospitalised as much as other pregnant ladies with sickle cell disease. Essentially, it helped curb sickle cell symptoms and allowed me to enjoy my pregnancy and get excited about the arrival of our little one.

 

“I cannot thank the Guy’s and St Thomas’ team enough. They looked after me, and the consultant leading this trial cared about me and my family, he knew I had concerns and called me to reassure me about the transfusions, he really did go above and beyond for me. I never felt like I was a number of just another patient, I will never forget what they did for me.

 

“I would be very happy to take part in research again. One of the reasons we now have amazing treatments is because people taking part in research help clinicians make things better for future generations.

 

"We need to continue to find better and more efficient ways of doing things, we need to support those who wish to bring about new change. We all have a part to play, and I urge others to volunteer in health and care research to help their children, grandchildren and future generations.”

 

 

NIHR: Improving the health of the nation

 

Professor Lucy Chappell, Chief Executive of the NIHR said:

 

“The best health and care research requires a number of important elements to come together: world-class researchers, cutting-edge facilities and the generous participation of the public."

 

"As we celebrate 75 years of our amazing NHS, today’s announcement reminds us that all three elements are firmly in place in this country, and that the UK as a whole remains one of the best places in the world to undertake clinical trials. We are so grateful for the continuing support of the many people who take part in research to help shape our future health and care. Thank you to everyone who has done so this year, and I hope even more people will be part of research in the future.”

 

 

Commenting on this year’s figures, John Sitzia, Acting Chief Executive of the NIHR Clinical Research Network said:

 

“Thank you to Ore-Ofe and the many other incredible people across England who have given their time to improve health and social care for themselves and others.

 

“Without their commitment, breakthroughs like the sickle cell trial that will shape treatments and care could not happen. The benefits that clinical research brings are profound, ultimately leading to the prevention of ill health, earlier diagnosis, faster recovery and better outcomes.

 

“There are opportunities for everyone to take part in research. The new health and care research ‘match-making’ service from Be Part of Research makes it easier than ever for people to find health and care research across every part of the country.”

 

 

Be Part of Research

Since July 2022 over 150,000 research volunteers have signed up to the new Be Part of Research service. Increasing the number of people taking part in clinical research is vital to help researchers find cures, treatments and breakthroughs.

 

As we celebrate the NHS 75th birthday on 5 July 2023, the NIHR is calling on people to join its Shape the Future campaign to help shape the NHS of the future through supporting and participating in research studies.

 

Be Part of Research Service helps people to easily find and take part in studies across the UK.

Register to take part in research in your area at: www.bepartofresearch.uk

 

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About the NIHR CRN Annual Stats

• The NIHR’s annual research statistics provide the most comprehensive data around the state of health research across the country. NIHR plays a key role in supporting and funding clinical research in England - including recruiting patients into vital studies which can potentially lead to the development better care and treatments ultimately making a difference to people’s lives.
• All data represents clinical research studies supported by the NIHR Clinical Research Network (CRN). Data are sourced from the NIHR CRN Portfolio of studies. The data does not include numbers of participants recruited into studies across other parts of the NIHR, particularly NIHR Biomedical Research Centres and Clinical Research Facilities. 

 

 

NIHR CRN Annual Statistics 2022/23

Research Participation

• Almost one million participants (952,789) took part in health and care research across England - an increase of over 220,000 on pre-pandemic levels*.
• Participants took part in nearly 5,000 NIHR-delivered studies in 2022/23 supported by the NIHR Clinical Research Network.

 

 

Life sciences industry research thriving

• The number of commercial studies in 2022/23 increased by almost 600 on pre-pandemic levels* to 1,757. The number of new studies has also increased to 764.

• 32,328 participants took part in commercial studies sponsored by the life sciences industry.
• It’s also really positive to see an increase in participants from primary care, giving more people the opportunity to benefit from taking part in commercial research.In 2022/23 17% of commercial research participants (5,961) came from primary care.

 

Participants experience of taking part in research

• Health and care research could not take place without the million people who give their time and effort to take part. Ensuring that these participants have a good experience of taking part and feel valued for their contribution is of paramount importance.

• In 2022/23, a total of 32,603 research participants completed the NIHR CRN’s Participant Research Experience Survey. This is more than double the annual ambition of 14,000, and is the highest annual performance to date. Their responses are helping us learn what we can improve for the future.

 

 

Supporting Good Clinical Practice (GCP) in clinical research delivery

• GCP is the agreed international standard for conducting clinical research. Compliance with GCP provides public assurance that the rights, safety and wellbeing of research participants are protected and that research data are reliable.

• 53,335 learners used NIHR Learn for their GCP certification in 2022/23, an increase of over 1,000 learners from 2021/22.
• In the last five years over 180,000 unique learners have used NIHR Learn (182,288) for their GCP certification.
  NIHR Learn provides a range of resources to develop knowledge of clinical research.

 

* Pre-pandemic comparisons taken from 2019/20 data for NIHR CRN supported studies.

 

Published 05/07/2023