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Launch of new international medical code for presymptomatic type 1 diabetes

Researchers at BHP founder-member the University of Birmingham have partnered with NHS England to produce a diagnostic code tailored for individuals in the early phases of type 1 diabetes, enhancing patient prospects for timely healthcare and access to cutting-edge treatments.

Today marks the introduction for a new SNOMED CT code specifically for presymptomatic type 1 diabetes, which will be integrated into the standardised and multilingual set of clinical healthcare terminology. SNOMED codes are crucial in electronic health records, being used to identify a person’s underlying medical conditions. This system acts as the most precise and extensive list in clinical health terminology globally.

Type 1 diabetes progresses gradually through three stages, with the initial two stages termed presymptomatic type 1 diabetes. Individuals in this phase exhibit biological markers, or autoantibodies, indicating the onset of the immune attack that targets insulin-producing beta cells. Given the absence of symptoms, detection relies heavily on screening initiatives such as the ELSA study, a trial led by Professor Parth Narendran at the University of Birmingham,  screening children for type 1 diabetes. Screening initiatives such as these will allow for early identification.

Lauren Quinn, who co-leads the ELSA study and assisted in the development of the of the SNOMED code, commented: “The introduction of this SNOMED code facilitates clinical care and follow-up for individuals with presymptomatic type 1 diabetes. It also allows researchers to identify people who could benefit from novel therapies to delay the onset of type 1 diabetes and recruit them to clinical trials of immunotherapies.”

“This will transform type 1 diabetes research by fast-tracking recruitment, unravelling how the condition develops and progresses, and bringing us closer to licensed disease-modifying treatments in type 1 diabetes.”

Dr. David Shukla, a GP and Clinical Research Fellow involved in code development, highlighted its practical implications: “The inclusion of a code for the diagnosis of presymptomatic type 1 diabetes will highlight to healthcare professionals involved in their care the individuals who are at high risk of developing type 1 diabetes. This will help ensure that when these people progress and develop symptomatic type 1 diabetes, it will be picked up and treated at a much earlier stage.”

“This reduces the risk of them presenting or being diagnosed late and developing diabetic ketoacidosis, an emergency complication of type 1 diabetes that can be fatal. This timely pick up and initiation of prompt treatment will lead to substantial improvements in their diabetes and future care.”

Hilary Nathan, Director of Policy and Communications at JDRF UK, added: “This recognition of presymptomatic type 1 diabetes with a SNOMED code is a crucial step towards the implementation of population screening programmes for early detection of type 1 diabetes. Early detection leads to short and long-term health benefits, improved quality of life and cost savings for healthcare providers.”

“The new code will unlock better monitoring, follow-up and education for people in the earliest stages of type 1. It will also help facilitate recruitment into clinical trials of emerging treatments, enabling people developing type 1 diabetes to access therapies that have the potential to claw back valuable time free from the burdens of type 1 diabetes management.”

The code for type 1 diabetes in SNOMED is ‘Diabetes mellitus type 1 – 46635009’. The new code presymptomatic type 1 diabetes, known as ‘‘Presymptomatic diabetes mellitus type 1 – 1290118005′, has now been introduced for inclusion in individuals’ electronic health records. 

These codes are now part of the ‘Health conditions’ category in the NHS app, allowing individuals and their families to access them as well. 

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New Inflammatory Bowel Disease testing protocol could speed up diagnosis

Patients with suspected inflammatory bowel disease (IBD) could benefit from improved testing protocols that could reduce the need (and lengthy wait) for potentially unnecessary colonoscopies, a new study has found.

In a paper published in Frontline Gastroenterology, researchers from the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC) tested a new protocol to improve IBD diagnosis combining clinical history with multiple home stool tests.

In the two-year study involving 767 participants, patients were triaged and had repeated faecal calprotectin (FCP) tests. The research team found that the use of serial FCP tests were able to strongly predict possible IBD as well as Crohn’s Disease and Ulcerative Colitis, and observed that a second FCP test was a strong indicator of a potential need for further investigation including colonoscopy; although the researchers observed that only 20% of patients had two samples submitted prior to referral to secondary care.

Dr Peter Rimmer from the NIHR Birmingham Biomedical Research Centre and corresponding author of the study said: “Patients who experience symptoms associated with inflammatory bowel diseases often have a long wait until getting a diagnosis, and current testing is under immense strain.

“Using a comprehensive 13-point symptom checker and multiple FCP tests, we have been able to identify much more accurately patients who had IBD and other diseases. The rollout of this protocol could reduce the time taken to get a diagnosis and start treatment for IBDs as much more of the screening and testing can be done through primary care. The sensitivity of multiple FCP tests can be used to flag those patients who urgently need referral into secondary care.”

Dr Rachel Cooney, Consultant Gastroenterologist at University Hospitals Birmingham NHS Foundation Trust, researcher at the NIHR Birmingham BRC and co-author of the study, added: “In its simplest form, this study may help improve referral triage for IBD patients.

“But as we plan new care pathways, it could open up new exciting possibilities: with the growing availability of home FCP testing, these tests’ results combined with simple symptom questionnaires could feed into algorithms that allow patients to self-refer to secondary care services, reducing strain on primary care.

“This is something we’re going to explore in a large follow-up study we’re currently initiating.”

The NIHR Birmingham Biomedical Research Centre is hosted by BHP founder-member University Hospitals Birmingham NHS Foundation Trust in partnership with fellow BHP founder-member the University of Birmingham. Its roster of partner organisations also includes BHP members Birmingham Women’s and Children’s NHS Foundation Trust; Sandwell and West Birmingham NHS Trust; and Aston University. 

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Objective biomarker test could predict heart disease risk for patients with common arrhythmia

Patients with atrial fibrillation (AF) – a common heart arrhythmia – could have one blood test to assess their risk of cardiovascular events in the following five years, new research has found.

Published in Cardiovascular Research and presented at the Frontiers in CardioVascular BIology Congress 2024 conference in Amsterdam, the research suggests that a blood-based biomolecule test alone could assess the risk of having a cardiovascular event in the next five years.

The study of 1,586 AF patients found that a cluster of high-risk patients who recorded high levels of 13 biomolecules had five times more cardiovascular events than those in the low-risk cluster.

Professor Larissa Fabritz, from the Department of Cardiology, University Heart and Vascular Center Hamburg, University Medical Center Hamburg Eppendorf and an Honorary Professor at BHP founder-member the University of Birmingham said: “These validated findings show that one blood test could be used to help predict the risk of cardiovascular events for patients with atrial fibrillation, helping to differentiate healthcare where it’s most needed. Through a further validation study carried out in Birmingham, we are confident that the blood test can give a useful understanding of those in greatest need of interventions to avoid strokes, acute heart failure and death.”

The international team developed a profile of 13 specific biomarkers that were used to differentiate risk in atrial fibrillation. Using samples from AF patients, they analysed likely target biomarkers and through the trial and validation in the Birmingham BBC-AF registry found that a combination of elevated biomarkers corresponded with risk variation in patients.

The findings are taken from a subset of the EAST – AFNET 4 (Early Treatment of Atrial Fibrillation for Stroke Prevention) trial which demonstrated that early rhythm control – with antiarrhythmic drugs or atrial fibrillation ablation – delivered within one year after AF diagnosis improves outcomes in 2,789 patients with early AF and cardiovascular risk factors compared to usual care (UC) over a 5-year follow-up time.

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Epilepsy in pregnancy – new project to create personalised care for at-risk mums

Pregnant women with epilepsy could see a major improvement in the care they receive through a new cross-BHP project led by the University of Birmingham with Birmingham Women’s and Children’s Hospitals NHS Foundation Trust (BWC), which also aims to reduce maternal mortality risk.

The EpiSafe project, funded by the National Institute for Health and Care Research over five years, will create and trial an evidence-based, personalised care bundle specifically designed for pregnant women with epilepsy.

The team of researchers, led by Professor Shakila Thangaratinam from the University of Birmingham and BWC, will provide healthcare professionals with the tools and guidance they need to streamline the care they provide and allow for shared decision-making with women regarding their epilepsy and pregnancy.

The EpiSafe project will also study the long-term effects of newer anti-epileptic drugs (AEDs) on children’s development. Many mothers are prescribed these newer AEDs due to concerns with older medications, yet they often discontinue them out of fear of potential harm to their baby.

As part of this study, the researchers across BHP will bridge the knowledge gap by assessing the long-term neurodevelopmental outcomes of children exposed to newer AEDs during pregnancy. This research will empower pregnant women with epilepsy, enabling them to make informed decisions about the safe use of AEDs.

Professor Shakila Thangaratinam, Dame Hilda Lloyd Chair of Maternal and Perinatal Health at the University of Birmingham and Consultant Obstetrician at Birmingham Women’s and Children’s NHS Foundation Trust said:

“Epilepsy continues to be one of the main causes of mothers dying in pregnancy and postpartum period. Sadly, we are not observing a fall in maternal deaths. On the contrary, there has been a doubling of the rates of Sudden Unexpected Death in Epilepsy (SUDEP) in mothers between 2013-15 and 2019-21 in UK and Ireland.

“We know that the primary factors contributing to these poor maternal outcomes are the lack of specialist antenatal care and reduced compliance with anti-seizure medication. The EpiSafe programme of work has the potential to improve the care these women receive and save lives within this high-risk group.”

At the core of the EpiSafe programme are mothers with lived experiences of epilepsy from diverse backgrounds. They will play a pivotal role throughout the lifetime of the programme in shaping the development and roll-out of the EpiSafe bundle. Charity partners on the programme include Epilepsy Research Institute and Epilepsy Action, who will provide invaluable insight and guidance.

Dr John Allotey, Associate Professor in Epidemiology and Women’s Health at the University of Birmingham and project leader said: “By working with diverse groups of women with epilepsy and their families, professional bodies, organisations providing care for pregnant women with epilepsy, as well as dedicated epilepsy charities, we will develop an acceptable, relevant and accessible tool which identifies pregnant women with epilepsy who are at high risk and promotes safe use of AED.”

The project consists of six work packages to create the EpiSafe risk assessment and treatment pathway, that will facilitate early specialist epilepsy care for high-risk women. The team will also evaluate whether EpiSafe will help more women at high-risk access specialist epilepsy care early in pregnancy.

The Epilepsy Research Institute’s Director of Research Partnerships, Dr Caoimhe Twohig-Bennett, said: “The Institute launched last month with Reproduction & Hormones as one of our overarching strategic research theme. We are delighted to be collaborating on the EpiSafe project, to ensure safer care and reduced risks for pregnant women with epilepsy.“Central to the work of the Epilepsy Research Institute is a culture of advocating and actioning the research priorities of people affected by epilepsy through our Shape Network PPIE group. Members of the network have been pivotal in the development of this programme of research, and we look forward to their continued involvement as this important project progresses.”

Rajinder Flora, Assistant Director of NIHR’s Programme Grants for Applied Research (PGfAR), which funds the research, said: “Epilepsy causes 1 in 10 of all deaths during pregnancy in the UK, this new project aims to identify women with epilepsy who are at highest risk of seizures and create a treatment pathway for them.

“Funding research like this is vital to provide evidence-based personalised care for pregnant women with epilepsy”

The EpiSafe team also includes co-applicants from University of Liverpool, University of Manchester, Birmingham City University, University of Aberdeen and Belfast Health and Social Care trust, as well as partnerships with Kings Health Partnership and Murdoch Children’s Research initiative.

The EpiSafe work streams consist of:

  • Gathering all evidence needed to design the EpiSafe bundle,
  • Co-designing and testing the EpiSafe bundle by working with women and healthcare professionals,
  • A randomised controlled trial to see if using the EpiSafe bundle improves care, reduces seizures and complications in mother and baby,
  • Studying the longer-term development of children aged 7-11 exposed to AEDs before birth,
  • Studying the cost of using EpiSafe and its long-term impact, and
  • Planning appropriate involvement and engagement with women with epilepsy and their support networks.

Parliamentary event

At a parliamentary event to launch the project hosted by former Health Minister Baroness Cumberlege – who chaired key report on harmful side effects of some medicine – patients and researchers explained about how important this project is for ensuring that women across the UK get a say in managing epilepsy during pregnancy.

Addressing the event, Baroness Cumberlege said: “Being pregnant is a very important stage for every woman, conscious that if all goes well she is bringing new life into the world. The EpiSafe programme is crucial in creating evidenced based pathways which must ensure the voices and experience of women directly shape solutions. The success of this programme will only be realised if there is meaningful collaboration between researchers, clinicians, and women with epilepsy and their families. Cooperation is vital to spur change.

“All those involved in the care of pregnant women have a duty to safeguard the wellbeing of all mothers with chronic health needs. I will follow the progress of innovations borne from initiatives such as this closely, and with the help of others advocate tirelessly for their swift translation into enhanced standards of care.”

Birmingham BRC receives £30m boost to improve treatment of inflammatory diseases

Increased funding for the renewed NIHR Birmingham Biomedical Research Centre will enable continuation of major developments around inflammatory diseases and new technologies and systems

The NIHR Birmingham Biomedical Research Centre (BRC) has been awarded more than £30 million in funding from the National Institute for Health and Care Research, a major funder of global health research and training, to support world-leading research into inflammation – including the development of new diagnostic tools and treatments for those with cancer, liver and heart disease, and many more illnesses.

The centre brings together multiple BHP members – including leading NHS providers led by the University Hospitals Birmingham NHS Foundation Trust and academic institutions led by the University of Birmingham – as well as other organisations working closely with charities and businesses. Its aim is to support research into inflammation which causes or worsens many common long-term illnesses including arthritis, liver disease and cancer.

This new investment represents an almost threefold increase in funding for the NIHR Birmingham BRC and will enable researchers to focus on eight areas of illness including heart disease, women’s health, and common complications from inflammation. Researchers will also be empowered to consider new tests and biomarkers for disease, health technologies including stem cells and gene therapy, patient experiences and data science.

Professor Phil Newsome, Director of the NIHR Birmingham BRC, said: “Inflammation plays a central role in many health conditions, with millions of people in the UK alone experiencing inflammatory diseases such as arthritis and bronchitis. This significant increase in funding will enable us to provide an outstanding environment for world-leading clinical research and allow us to make a step-change in our work tackling different forms of cancer, trialling new drugs for liver disease, and dealing with antimicrobial resistance.”

Patients will benefit from the increased funding thanks to the BRC’s collaborative research that has seen nearly 1,000 clinical trials and informed UK clinical guidelines.

Researchers will look at eight themes to continue to understand and help patients manage inflammation-based diseases including cancer, arthritis, and liver disease. The investment of the NIHR funding in biomedical research will enable clinicians, researchers, patients and supporters to find new treatments such as the development of new immunotherapies, which are types of cancer treatments to support the body to fight cancer.

Professor David Adams, Director of BHP, commented: “The investment from NIHR is hugely important for researchers working across the BRC partner institutions, to continue to tackle some of the critical health themes that affect our region. The funding will allow us to deliver new therapies and diagnostic tests for a range of chronic inflammatory diseases for which we currently have few effective treatments.”

Professor Lucy Chappell, Chief Executive of the NIHR, said: “Research by NIHR Biomedical Research Centres has led to a number of ground-breaking new treatments, such as new gene therapies for haemophilia and motor neurone disease, the world-first treatment for Creutzfeldt–Jakob disease, a nose-drop vaccine for whooping cough, and the first UK-wide study into the long-term impact of COVID-19.

“This latest round of funding recognises the strength of expertise underpinning health and care research across the country and gives our nation’s best researchers more opportunities to develop innovative new treatments for patients.”

The Birmingham Biomedical Research Centre is made up of the following BHP member organisations:

  • University Hospitals Birmingham NHS Foundation Trust
  • University of Birmingham
  • Sandwell and West Birmingham NHS Trust
  • Birmingham Women’s and Children’s NHS Foundation Trust
  • Aston University

Working closely with partners:

  • Birmingham Community Healthcare NHS Foundation Trust
  • Keele University
  • University of Oxford

Revolutionary technology has potential to help children with asthma

BHP members Birmingham Women’s and Children’s Hospitals have initiated a new study which could potentially revolutionise care for young people with asthma using artificial intelligence technology.

Over the next two years, 50 children and families will take part in the Childhood Home Asthma Monitoring  Study (CHAMP), which uses a small table-top electronic device designed by Albus Health, not dissimilar in size to an Amazon ‘Alexa’ virtual assistant, to personally monitor a child’s symptoms and breathing while they sleep.

Using sensors and a microphone, it measures breathing and heart rate by analysing coughs, wheezing and other noises, while also assessing environmental factors, such as humidity and air pollution levels. The data collected over a period of months will help form a unique and personalised set of triggers which is able to warn of a future asthma attack days before it potentially happens, allowing for action to be taken.

Around one in 11 children in the UK has asthma and it’s one of the most common chronic conditions which causes hospitalisations. The potential of this AI technology is potentially huge; positively impacting thousands in the future.

Dr Prasad Nagakumar, Respiratory Consultant, is the Chief Investigator leading this exciting £1.6million CHAMP study, funded by the National Institute for Health Research. He’s looking forward to working alongside partners including Asthma UK, Imperial College London, Oxford Academic Health Science Network and Royal Brompton Hospital, where patients are also being recruited to take part.

Dr Nagakumar said: “I’m delighted that we’ve now started this exciting study, which has such a huge potential. Over the next two years we’ll be working hard to further understand and develop the use of this innovative monitoring and, importantly, prediction technology.

“Our aim is to build algorithms and clinical-supporting tools for the early detection of asthma attacks in children by capturing warning signs before patients or those giving care perceive them.”

Professor Jeremy Kirk, Clinical Director NIHR Clinical Research Network (West Midlands) and Research and Innovation Director at our Children’s Hospital, said: “Asthma is the most common chronic disease in childhood and blights many lives. This project utilises the very newest cutting-edge technologies to give us further understanding of this condition, hopefully enabling better monitoring, optimal care and a reduction in hospital admissions.

“Dr Nagakumar and the team are to be congratulated on being awarded this highly competitive and prestigious grant.”