Research Projects | Peeps | HIE Awareness & Support

Research Projects

Research Projects

It’s great to hear that research is taking place to improve outcomes for those affected by H.I.E., as well as looking at new treatments and ways to reduce instances occurring in the first place.

Please see below some the research studies and trials that we are aware of and involved in.

Parent and family voices are always so important, and if you’d like to be involved in any way, please do get in touch via info@peeps-hie.org.

Department of Medical and Molecular Genetics

Dr. Patrick Campbell

How do prenatal and perinatal factors contribute to developmental disorders?

Dr. Campbell, an academic and doctor, is studying for a PhD on developmental disorders at King’s College London. His research is looking at the role of prenatal and perinatal factors, such as hypoxic ischaemic encephalopathy, in the development of these conditions. To do this, he analyses data from individuals in the 100,000 genomes project, using computer-based approaches.

He is supported by research and clinical supervisors. He has worked with a member of Peeps to shape his project. While he is currently focusing on research, he may reach out again if further patient perspectives are needed.

Avoiding Brain Injury in Childbirth (ABC)

Supporting maternity services to reduce risks of avoidable harm in childbirth and improve care.

Innovative improvement programme will support high quality, personalised maternity care to reduce risks associated with two significant contributors to avoidable brain injury in labour.

Following the successful pilot of the Avoiding Brain Injury in Childbirth (ABC) programme, a national rollout is planned for September. The programme was delivered by the Royal College of Obstetricians and Gynaecologists, the Royal College of Midwives, and The Healthcare Improvement Studies (THIS) Institute at the University of Cambridge.

Avoidable brain injury acquired during labour (intrapartum care) can have devastating consequences for babies and their families, along with significant lifetime costs for health and care services, including clinical negligence costs. 

Developed and piloted over three phases spanning 2021-2025, the ABC programme is designed to reduce the risks associated with two key contributors to avoidable brain injury: managing impacted fetal head at caesarean birth, and recognising and responding to the baby who may be deteriorating during labour. 

Organised into two modules to address these two significant contributors, ABC offers clear clinical practice standards with supporting resources, including high quality training. A cascade model, where clinical champions from maternity units are trained to train their local teams, was successfully used to spread good practice. The programme was co-designed with both service users and maternity professionals to support best care, including communicating effectively and respectfully with the person in labour and their birth partner. 

Involving women, birthing people and birth partners has been a defining feature of the ABC programme. For the pilot, a specially established Maternity Patient and Public Involvement panel participated and fed into programme tools, resources and training. Their contributions were invaluable in ensuring the priorities of maternity service users remain paramount.

For the ABC module on impacted fetal head at caesarean birth six maternity units participated in train-the-trainer events. Participants learnt about the evidence base for the different techniques and practised these using specially designed manikins, with a strong focus on team working and communicating with women and birth partners. Clinical champions from these units then trained their colleagues locally, meaning that dozens of staff were trained in under three months. An independent evaluation by RAND Europe reported that both the train-the-trainer and the local events were very well received.

The ABC module on recognising and responding to suspected fetal deterioration operationalises current national guidance to integrate a range of intrapartum risk factors into a single standardised approach so that decision-making and action are supported more effectively, including a new tool and a strong emphasis on teamwork and communication with those in labour. Six maternity units participated in train-the-trainer events over two cycles. The clinical champions trained at these events then implemented the training locally within three months, again reaching a large number of staff quickly and effectively. The independent evaluation of the pilots informed the optimisation of the tools and training, as well as identifying improvements after optimisation, and offered insights into how to implement the new approach where current practices are often variable.

The pilot has also developed a quality assurance framework, a data strategy, a strategy for digitising the ABC tool, a delivery and implementation strategy, and principles to guide a future evaluation of the national programme.

Cochrane

Cochrane is a global, independent, non-profit network of health researchers and professionals, patients and carers who work together to produce and promote trusted, high-quality health information that improves health and healthcare worldwide.

We review all the research on a wide range of health topics, and summarize the best evidence to help patients and health organizations to make informed decisions.

We use sophisticated methods to combine and compare studies, sometimes hundreds of them. This makes our reviews more reliable than individual studies. The end result is a type of health evidence known as a ‘systematic review’. Cochrane is considered the leader in systematic reviews by health professionals, researchers and policymakers around the world.

Our health evidence has led to changes in treatments and policies that have saved and improved millions of lives: premature babies, pregnant women, trauma patients, older people, those with chronic lung disease, COVID-19, malaria, sight loss, dementia, mental illness and many more.

MATILDA trial

Was your baby cooled after their H.I.E. event?

If so, you may wish to join a focus group for the MATILDA trial. (MATILDA stands for Melatonin And other Therapies to Improve Long-term Disabilities in Perinatal Asphyxia).  

The research team would like to run a couple of UK focus groups to get the views of parents about the acceptability of the trial design, interventions and outcomes through a couple of evening online focus groups lasting 1.5 hours.

You can email christina.cole@npeu.ox.ac.uk for further information.

MATREP Study – your voice matters, you matter.

Take part in research and use your voice to change care. We have been supporting a study we’d love you to take part in if you can. It’s being led by Manchester and Oxford universities and we’re on the advisory group. Researchers want to know about your experiences so they’ve created a survey, with our help, asking questions around parents’ experiences if their baby was harmed in NHS care after January 1st 2019 in England.  

It takes 10-15 minute and is completely anonymous. It has been commissioned by the government because the NHS wants to improve care for all families. 

The survey focuses on reviews or investigations that take place when a baby  experiences harm. Regardless of whether you are aware or not whether you had a review or investigation, please consider taking part. Your voice is valued and can lead to change. 

You can click here to take part in the survey, and hear more from Keji an Charlotte about the project in the short video below.

The NeoPACE Study

‘We would like to speak to families who would be willing to share their experiences of neonatal palliative and/or end of life care, to help us understand how we can improve support given to families across the country. Please find more information at https://www.ucl.ac.uk/womens-health/neopace or contact us neopace@ucl.ac.uk

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