ISTH Washington

I will always be incredibly grateful to HaemSTAR for providing the funding that enabled my trip to Washington, D.C. (the destination for coagulation—if you believe the posters!) for ISTH. So, first and foremost, thank you! 

I was a little apprehensive beforehand, but the conference was exceptionally well-organised and intellectually stimulating, covering a broad range of topics—from cutting-edge scientific research to clinical studies with direct relevance to patient care. The results from the first head-to-head study of Apixaban versus Rivaroxaban in VTE are likely to drive meaningful changes in clinical practice. 

I had the honour (albeit one I briefly wished on someone else) of presenting our analysis of a 15-year cohort of patients with acquired haemophilia A treated at the Royal London Hospital. Presenting to a room of 500 people, with the session chaired by none other than Professor Tiede—an expert in the field—certainly added to the pressure. But the conference environment was thankfully both supportive and encouraging. It was a surreal, yet invaluable, experience to have world-leading experts commenting on my work. 

I would wholeheartedly encourage other trainees to consider submitting their work to ISTH in the future. 

There’s something truly special about being surrounded by experts from across the globe, all equally committed to education and improving patient care. The exchange of ideas—through oral presentations, poster sessions, and even informal conversations over coffee—has given me a great deal of inspiration and food for thought.  

My Journey to BSH 2025: A Trainee's Perspective from Sri Lanka

I recently had the incredible opportunity to attend the British Society for Haematology (BSH) Annual Scientific Meeting 2025, held in Glasgow from April 27 to 29. I’m deeply grateful to the HaemStar ISTH Legacy Fund for making this experience possible through their generous support.

Although I am currently working as a Clinical Fellow at the Royal Manchester Children’s Hospital, attending the BSH 2025 Conference marked a significant milestone in my journey as a Paediatrics trainee from Sri Lanka. I was both thrilled and admittedly a little nervous to present two posters based on work I had carried out back home in Sri Lanka. I had the privilege of showcasing a research project titled ‘Place of Bone Marrow Examinations in Children: A Study from a Resource-Limited Setting’ and a case report on ‘Infantile Giant Cell Hepatitis with Autoimmune Hemolytic Anemia in a Sri Lankan Infant.’

The research poster focused on the utility of bone marrow examinations in children, reflecting the challenges we often encounter in day-to-day clinical work. Our findings revealed that only about half of the examinations resulted in pathological diagnoses. This highlighted an important consideration: with greater access to advanced laboratory investigations, the need for this invasive procedure could be significantly reduced, especially in low-resource settings like ours. I particularly appreciated the engaging and constructive discussions during the Poster Walk. Many clinicians shared insightful perspectives on the growing potential of non-invasive diagnostic tools. These interactions made the entire experience deeply stimulating and professionally rewarding.

An unexpected meeting with my consultant, Dr. Chandima Thevarpperuma, co-author of my abstracts and a mentor for the project, who had travelled all the way from Sri Lanka, was an unforgettable highlight of the conference. Meeting in person and sharing this professional milestone together made the experience even more memorable. I would also like to express my heartfelt gratitude to my co-authors who supported me throughout this journey, as well as to my other supervising consultants Dr. Nipunika Senadheera, Consultant Haematologist, and Dr. Kumudu Weerasekara, Consultant Paediatrician.

Before arriving, I wasn’t quite sure what to expect from Glasgow or the conference itself. But from the moment I stepped into the venue, I felt welcomed into a vibrant community of passionate haematology professionals from around the world. The sessions were both thought-provoking and inspiring, covering a wide range of topics from cutting-edge therapies to practical clinical insights. I especially appreciated the focus on paediatric haematology, which not only strengthened my clinical understanding but also sparked new ideas for future research. The sessions on advanced treatment options for children with haemophilia were particularly fascinating and gave me a deeper appreciation of how rapidly the field is evolving.

I was truly amazed by the advancements in gene therapies and other novel treatments in the field of hematology being developed and implemented in high-resource settings. At the same time, it was a stark reminder of the disparities that still exist, while the developed world moves forward with innovations, many parts of the developing world continue to struggle with access to even basic healthcare resources. Attending this conference reinforced my commitment to advocating for improved paediatric care in resource-limited settings. It has inspired me to engage more actively with stakeholders in my country and to build international collaborations that can help elevate the quality of healthcare back home.

Participating in BSH ASM 2025 has been a truly transformative experience. It has expanded my horizons, strengthened my interest in paediatric haematology, and further fueled my passion for ongoing research in resource-limited settings. I’m deeply grateful to the HaemStar ISTH Legacy Fund and my paediatrics team at Royal Manchester Children’s Hospital for making this journey possible.

BSH 2025 - Glasgow

With sincere gratitude to the ISTH Legacy Fund, I had the invaluable opportunity to attend the 65th Annual Scientific Meeting of the British Society for Haematology (BSH) in Glasgow—my first national conference.

As part of our fourth-year curriculum, my project partner and I conducted an audit on the diagnosis and management of heparin-induced thrombocytopenia (HIT) across two major UK hospitals, under the guidance of Dr Richard Buka. We were thrilled when our abstract was accepted for a poster presentation at a national conference.

Our first day in Glasgow started with an enjoyable walk to the venue, taking in Glasgow’s picturesque streets and vibrant greenery. On our way there, we experienced great difficulty deciding which sessions to attend as there were so many options, all of which seemed equally fascinating and relevant to our interests. The conference began with a compelling plenary lecture by Professor James O’Donnell, offering a profound insight into von Willebrand disease and his team’s pioneering research.

The rest of the day included informative sessions on haemostasis and thrombosis, where I was pleased to see a familiar face—Dr Will Lester from Queen Elizabeth Hospital Birmingham—presenting clinical cases on thrombocytopenia. Having previously attended one of his lectures via the HaemSoc at our medical school, this brought a sense of continuity to my learning. We also spent time speaking to charities and pharmaceutical companies in the exhibition hall, learning about the new discoveries and ongoing work.

On the second day, we were especially proud to attend a talk by our supervisor on HaemSTAR’s mission, followed by an inspiring session from Dr Michael Egolum, who shared his experiences of working closely with HaemSTAR and overcoming research challenges in Nigeria. Additionally, the ‘Dragons’ Den’ style presentations sparked ideas on practical, impactful research initiatives. These short talks were extremely inspiring and led me to appreciate these clinicians’ passion in the field of Haematology.

In the afternoon, we attended oral abstract presentations in general, obstetric, and immunohaematology—topics particularly relevant to our stage of training. The day ended with a poster walk, where we received feedback on our own work, networked with other clinicians and students. We also dedicated time to exploring the extensive poster hall, analysing methodologies and data presentation across various haematology domains. This prompted reflection on our own audit and areas for future improvement. The evening concluded with a lively dinner with the warm and welcoming HaemSTAR community.

The final day began with a ‘Crucible Session’, where trainee haematologists pitched innovative ideas. A standout moment of the day was the lecture by Professor Andreas Greinacher, a leading expert on Anti-PF4 antibody disorders. As our audit focused on HIT, hearing directly from one of the key figures in the discovery of VITT added tremendous value. His explanation of the pathophysiology and research behind these conditions deepened our appreciation for the ongoing evolution within haematology.

The BSH conference was a truly enriching experience — academically stimulating, professionally inspiring and personally fulfilling. It not only enhanced my knowledge in haematology but also reaffirmed my passion for the field. Going forward, I am motivated to pursue research with greater precision and purpose, and to remain actively involved in the haematology community.

Underserved/Overlooked: The Haemophilia Society Report into the failings of care for women and girls with bleeding disorders. Parliament Launch.

Dr Laura Knox

Women’s Health Lead - HaemSTAR

Glasgow

On Thursday the 3rd of July, I attended parliament to witness the launch of the Haemophilia Society’s report into the current failings in care for women and girls with bleeding disorders in the UK. (Underserved/Overlooked)

Alongside my colleagues, Jayna Mistry (Haematology Registrar & HaemSTAR committee member), Dr Gill Lowe (Consultant Haematologist) and Imogen Swart-Rimmer (Haematology Registrar), we travelled to Westminster on the kind invitation of the Haemophilia Society.

The report is a comprehensive study looking at all aspects of a girl and woman’s life with bleeding disorders in the UK currently, taking 3 years to fully compile.

The report found that, on average, women are diagnosed with a bleeding disorder 16 years later than men and it was estimated that up to 50,000 women live with an undiagnosed bleeding disorder.

This pattern of prolonged time to diagnosis discrepancy has also been reflected in the PIVOT-vWD UK study, which showed the median diagnosis was 10 years later in women compared to men.

Many of the women interviewed during this report felt their health concerns weren’t taken seriously, that there was a reluctance to accept women who have the haemophilia gene as anything other than “just carriers” and told that especially in cases of heavy menstrual bleeding they “just had to get on with it”. The patient stories included in the report are powerful and are across a range of diagnoses and age groups, the youngest being aged 9.

The report found that as well as underdiagnosis in women and girls that there was also significant gaps with treatment such as with prophylaxis therapies and limited access to specialist gynaecology input  only 8 (out of 29) comprehensive bleeding disorder care centres offer joint haematology and gynaecology clinics. Furthermore, the discussion around heavy menstrual bleeding highlighted the limited access to management options and demonstrated the significantly higher rate of iron deficiency/iron deficiency anaemia in women with VWD such as in the PIVOT-vWD study.

The report provides 19 recommendations covering the entire patient journey from diagnosis, prophylaxis and treatment throughout a woman’s life from menarche to menopause.

At the report launch, hosted by Clive Efford MP, we heard from many of the contributors from the report, including researchers, patient, patient advocates and clinicians (including our very own Dr Lowe) and we have an opportunity to network and discuss the next steps we need to implement the recommendations made in this report.

This report is a call to action; it does not shy away from being critical of the current environment in which many girls and women with bleeding disorders have experienced and represents the first steps in a long road to overhauling bleeding disorder care.

Attending this launch was inspiring and thought-provoking. It has made me reflect on planned pieces of work I can do in my own personal professional sphere and as part of HaemSTAR. In the next year, we are launching WoMeN-ID, a project looking at heavy menstrual bleeding and iron deficiency, I’m really excited for this project and would welcome any one to get in touch if they would like to be involved.

The full report can be accessed via the Haemophilia Society’s website (https://haemophilia.org.uk/underserved-overlooked/)

BSH 2025 - Glasgow

​Thanks to the generous support of the HaemStar ISTH Legacy Fund, I had the incredible opportunity to attend the British Society of Haematology Annual Scientific Meeting 2025, held from the 27th to 29th April in Glasgow. As my first academic conference, it was an inspiring, educational, and thoroughly enjoyable experience.

I was there to present a poster on the HaemStar AudHIT project, which investigates the diagnosis and management of Heparin-Induced Thrombocytopenia (HIT). Our poster focused on the diagnostic side, and our analysis concluded that patients with suspected HIT undergo a sub-optimal diagnostic work-up, highlighting an important area for improvement in clinical practice. I valued the thought-provoking discussions with clinicians during the Poster Walk—particularly around the use of the HIT Alert Card and the underlying reasons behind the deviation from diagnostic guidelines.

Beyond the poster presentation, the conference was packed with engaging sessions. A few highlights included:

·       The Sir John Dacie Lecture by Prof Andreas Greinacher, which was especially relevant to our project. His talk on anti-PF4 antibody disorders offered detail into the mechanisms behind HIT and VITT — complementing our research focus.

·       The Crucible session which featured creative, forward-thinking ideas to improve the care of our ageing population. Solutions ranged from encouraging doctors to move to more rural areas, through to redesigning training pathways. However, I felt the winning idea was particularly ingenious given my interest in paediatrics, which proposed applying principles from paediatric care to geriatric services which was a perspective I hadn’t considered before.

·       The top abstract presentations spanned topics in general haematology, obstetric haematology, and immunohaematology. Not only was the research itself fascinating, but it gave me an insight into what makes an effective and engaging presentation, with complementary discussions. I will certainly aim for oral presentations in the future, so this was useful both in terms of content and delivery.

To top it all off, we also emersed ourselves in some of the Scottish culture! The appearance of traditional bagpipes just before the poster walk brought a unique and unforgettable touch to the conference. As this was my first visit to Scotland, I also took the opportunity to explore both Glasgow and Edinburgh, and the scenic views it has to offer – making the whole experience even more special.

 Being my first conference, I had no idea what to expect – but the experience did not disappoint. I’m incredibly grateful to the HaemStar ISTH Legacy Fund for making this experience possible. Attending BSH ASM 2025 has deepened my understanding of haematology and sparked an interest in research. I hope to attend similar conferences in the future!

Bridging the Gap: Advancing Knowledge in Obstetric Haematology

Dr Giulia Simini

Haematology Registrar and PhD candidate (UCL)

HaemSTAR Obstetric Haematology committee lead

Member of BSH Obstetric Haematology SIG

Despite growing recognition of the importance of women's health research, significant gaps remain, particularly in the management of thrombosis during pregnancy. Thrombosis is a leading cause of maternal morbidity and mortality, yet much of the guidance on its management is extrapolated from non-pregnant populations. This lack of direct evidence leaves clinicians navigating treatment options with limited data, often relying on expert consensus rather than robust, pregnancy-specific research. A key example is the treatment of pulmonary embolism (PE) in pregnancy. Current guidelines suggest a cautious approach, but variations in practice highlight the uncertainty surrounding optimal management. To explore this, HaemSTAR conducted a UK and Ireland-wide physician survey on PE management in pregnancy, presented at EHA 2024. The findings revealed significant discrepancies in practice, further emphasising the need for high-quality studies. This survey has now been submitted for peer review, and we hope it will contribute to improving evidence-based care.

The variation in practice seen in the survey reflects the broader uncertainty in managing thrombosis in pregnancy, which is exactly what we are trying to address through the Maternal Audit on ThRombosis Outcome and decisioN (MATRON) study, which reviews real-world data on the management and outcomes of high-risk and intermediate high-risk venous thromboembolism in pregnancy over the past 10 years. The study currently involves over 30 centres, with case records approaching 60. Beyond the research itself, being involved in MATRON has been an invaluable experience. The obstetric haematology community is incredibly supportive, and working alongside clinicians and researchers who are passionate about improving maternal health has been inspiring. The collaborative nature of this field has made the challenges of research far more rewarding.

An important part of this journey has been engaging with patients. Presenting MATRON at a PPIE event led by Thrombosis UK last year reinforced just how vital it is to listen to patients’ experiences. Hearing directly from those affected by pregnancy-related thrombosis provided invaluable insight into the ongoing concerns many face long after the acute event. Involving those with lived experience ensures our work remains relevant and responsive to the real needs of patients.

One of the best aspects of working in obstetric haematology research has been the sense of community. The HaemSTAR network, alongside national and international specialty groups, creates a welcoming environment where trainees and early-career researchers can engage in meaningful projects. Through shared knowledge, mentorship, and collaborative studies, we are making gradual but important progress in addressing the long-standing gaps in women’s health. However, there is still much to be done. Research in women’s health remains underfunded, and large-scale studies continue to face logistical challenges. Moving forward, greater investment and multidisciplinary collaboration will be crucial to improving the evidence base and ensuring that women receive the best possible care.

Reflecting on my journey in obstetric haematology, I feel optimistic about the future: we are taking steps towards generating better evidence to guide clinical practice. There is still a long way to go, but the enthusiasm and dedication of those working in this field give me confidence that meaningful change is possible. For those considering getting involved, I would encourage you to do so. The obstetric haematology community is an incredibly supportive place to learn and grow, and every contribution—big or small—helps move the field forward.

EAHAD Conference 2025

I was fortunate in February 2025 to attend the 18th annual congress of the European association for haemophilia and allied disorders (EAHAD) in Milan, Italy, and I am very grateful to HaemSTAR for their support via the HaemSTAR ISTH Legacy Fund award. 

 I have previously heard very positive things about the EAHAD congress, and having never had an opportunity before to attend, I was really pleased when my abstract was accepted for an oral presentation. The congress is held over four days, one of which is dedicated to allied health professionals, and apart from the satellite symposia, the remainder of the programme is in one (very large!) conference hall. This means there is a real feeling of inclusion, with everyone attending all sessions, and no deliberating about which session to attend, and which to miss. The programme was cohesive, comprehensive, and extremely educational. There was a breadth of sessions focused on haemophilia, from the opportunities and challenges of novel therapies and the latest on gene therapies to the increasing issues around frailty and the psychosocial aspects of coping with ageing and associated complications. There were excellent talks on Mim8, Efanesoctocog Alfa, SPK-8011, Marstacimab and other therapies. One session of talks was under the heading “A century of von Willebrand disease;” I really enjoyed the practical and educational content, covering diagnosis, epidemiology, optimal treatment, and novel therapies. The range of projects presented as posters was also incredible, and due to the compactness of the congress there was plenty of opportunity in breaks to browse these.

I presented in the SLAM session, about a project I had been working on with haemophilia and respiratory colleagues at The Royal London Hospital, on our screening and surveillance pathway for patients with Hermansky-Pudlak syndrome (HPS) at risk of the invariable fatal complication pulmonary fibrosis. I was incredibly nervous for two main reasons before my talk. Firstly, the room was HUGE, by far the largest audience I have presented to so far, and secondly there were very few talks on platelet disorders across the congress, and I was unsure how it would be received. I was, therefore, happy to both remember what I wanted to say and take some interesting and challenging questions from the audience. In the break that followed I also spoke with several attendees about the importance of this screening and how we might collaborate, given the rarity of HPS.

 The penultimate evening of the conference was the networking event at the beautiful Polazzo Bovara in Milan, a lovely opportunity to catch up with familiar faces and discuss clinical practice and research with haematologists from across Europe. I had a fantastic time at EAHAD 2025, both from the perspective of the intense educational and scientific content as well as time spent with colleagues and meeting new people. My only regret, not seeing any of Milan….another time!

ASH December 2024

I had always heard great things about the American Society of Haematology (ASH) annual scientific meeting. Colleagues had told me about the groundbreaking plenary where the initial clinical data on CRISPR-Cas9 gene editing for sickle cell disorder and thalassemia was presented - eliciting audible gasps from the audience. They also raved about the incredible social side of the conference. So, as you can imagine, I was over the moon when my poster presenting data on parvovirus b19 cases in red cell disorders in 2023-2024, was accepted. This gave me the opportunity to attend the 2024 conference with my colleague and good friend Ethan. Escaping the dreary December weather in London for sunny San Diego was an added bonus!

We arrived in San Diego on Friday night and met up with some colleagues from HaemStar for spicy margaritas and some excellent pizza. By Saturday morning, after fuelling up on car park tacos, we were ready to dive into the conference. To say I was overwhelmed by the scale of ASH would be an understatement—who knew there were so many hematologists in the world? By the end of day one, however, I felt a renewed sense of hope for new therapies in sickle cell disorder, particularly considering the recent withdrawal of Voxelotor and Crizanlizumab.

Some of the standout moments for me included oral presentations on gene editing technology, which has already had a transformative impact on patients' lives. The technology is becoming more refined, with exciting lab progress, such as in vivo gene editing using a lipid nanoparticle delivery system to target the haematopoietic stem cells in the bone marrow. There were also promising phase 2 trial results on the use of hydroxycarbamide for patients with the HbSC genotype, as well as new data on PK activators. The conference left me extremely hopeful that a broader range of therapies will soon be available for sickle cell patients. Of course, ASH also provided the perfect opportunity to network with colleagues from around the world—and to enjoy the incredible Mexican food in San Diego!

On our last day, Ethan and I had a bit of downtime, so we headed to La Jolla Beach, where we saw dolphins swimming offshore and countless leopard sharks in the shallows. We then visited the world-famous San Diego Zoo—an absolute must for anyone planning a trip to the city, shout out to the pandas Xin Bao and Yun Chuan who put on absolute show for us.

All in all, ASH was an unforgettable experience, combining cutting-edge science, invaluable networking, and a taste of the vibrant culture and cuisine of San Diego. I can’t wait for the next one!

ASH - December 2024

ASH, alongside EHA, is one of the two largest international haematology scientific meetings held annually, covering everything from transfusion reactions to T-cell lymphoma pathobiology. An abstract based on research I carried out at UCLH looking at our use of immunoglobulin replacement therapy for those with immunodeficiency secondary to haematological malignancy was accepted as a poster presentation. HaemSTAR very kindly supported my attendance at the meeting to present this work through the ISTH Legacy Fund. This was my first time attending the meeting, and more importantly, my only opportunity all year to eat tacos for six days in a row.  

Day 1:  

We arrived in sunny San Diego (a much appreciated change from the wet and cold London weather… although slightly jarring to see Christmas decorations in the heat of a 25 degree midday sun!). It was evening by the time we got from the airport to our AirBnB – just enough time to settle in and plan which sessions we would like to attend over the coming days before meeting up with some other HaemSTAR folks (and friends of HaemSTAR) for a slightly jet-lagged dinner! The haematology chat was strong so I’m counting this as the first scientific session of the trip.    

Christmas decorations in the sun(!) 

Day 2:   

Up bright and early to catch the first talks of the day. The conference is held in a huge complex in downtown San Diego by the seafront (the very same they use for San Diego Comic Con – to give you an idea of scale!). We were economical with our accommodation choice and not staying nearby. However, given the weather was so nice we decided to take the scenic route and walk to the conference centre on the first morning, featuring a stop in a petrol station for Tasty Mexican Meal #1 (better than it sounds I swear). The one-hour walk was maybe not the brightest idea given it was quite a bit warmer than expected – we really appreciated the AC when we arrived for the first talk!  

My research interest is red cell haematology and transfusion so the day was spent in back-to-back sessions about sickle cell.  These were all of exceptional quality – the highlight today was the Ham-Wasserman lecture delivered by Dr Dipty Jain who shared an inspirational story of setting up a service for patients with SCD essentially from scratch in Nagpur, India in the 1980s – an effort which has led to the development of a national programme for the care of patients with SCD known as the National Sickle Cell Anaemia Elimination Mission. If you plan to watch only one session from the whole meeting, this is the one.  

Tacos!!! 

Day 3:  

Another early start featuring lots of brilliant red cell talks from some fantastic individuals. Talks today included a glimpse at the next generation of gene therapies for our patients which improve on existing CRISPR-based approaches by applying more sophisticated base editing techniques and engineering resistance to conditioning regimens in edited cells to improve the ratio of edited to non-edited cells following engraftment. 

The highlight, however, was a plenary talk by Dr Yvonne A. Dei-Adomakoh presenting the results of the PIVOT study: a randomised, placebo-controlled trial of hydroxyurea for Ghanaian children and adults with haemoglobin SC disease. This is the best kind of research in my opinion and the kind of work that HaemSTAR champions! Robust, simple trial design featuring an inexpensive intervention (hydroxyurea, which has been generic for ages!) with a view to answering a question which everybody has wanted answered for years – should we be giving HU to all-comers with HbSC in the same way we do with other SCD genotypes (HbSS, S-beta0)? Historically, HbSC patients have been under-represented in clinical trials due its relatively lower prevalence in the places where trials are usually carried out (e.g. about 20-25% of all SCD patients at our centre).  

Here, the investigators have used a simple method to enrich for HbSC participants – they based the study in Ghana which has a very high prevalence of HbSC! The study was led by clinicians in Korle Bu Teaching Hospital in Accra, Ghana with support by Cincinnati Children’s Hospital Medical Center. This is a great example of inclusive research done right – empowering clinicians to carry out research which directly involves and benefits a population which has been traditionally overlooked by existing research! The results? HU is probably beneficial to all-comers with HbSC. However, as it was a phase 2 study it failed its primary endpoint of difference in dose-limiting toxicities in the HU group vs placebo group. To those familiar with treating patients with HU, we know that the effect of HU varies a lot between individuals and the dose often needs to be tweaked – so a DLT primary endpoint is not particularly meaningful in this population. However, it seemed to show benefits in all other outcomes (except one death in the HU group due to acute chest syndrome – which many suspect was disease-related rather than secondary to HU therapy). The group are planning a phase 3 to definitively answer the question using a sample size which is powered to detect a statistically significant difference in efficacy between HU and placebo.  

In the evening, I presented my poster in the dizzyingly packed poster hall (think Oxford Circus on the weekend before Christmas!) featuring lots of interesting discussions with fellow clinicians, researchers and industry representatives. Tacos followed.  

Ready to present our work in the poster hall!  

Day 4:

Mercifully – a slightly later start today! But no less packed with fantastic sessions. Highlights today included a robust discussion about the withdrawal of voxelotor from the international market – something which has been a huge blow to the sickle cell community, patients and clinicians alike; experts discussed what went wrong and how we can design better trials for SCD in the future. A must-watch for anybody interested in clinical trial design! The Ernest-Beutler Prize in the afternoon featured a lecture by Dr Stuart Orkin and Dr John Tisdale on gene therapy in SCD – this stuff approaches science fiction and makes you very proud of the amazing medical advances humanity has achieved!  

Another poster session in the evening – conference-buddy Dr Chloe Merrion presented her awesome (and very topical) Observational Data on Parvovirus B19 Cases in Patients with Red Cell Disorders in the United Kingdom from 2023-2024. We met a fellow clinician from Atlanta whose US data complemented ours. I provided moral support and drinks to the poster presenter when requested. 

Day 5: 

A day off swimming, reading and napping in the sun. We realised that the ASH conference bag doubles up really well as a beach bag. We were not the only ones to make this realisation based on the number of bags spotted at the beach. We saw many seals and (unplanned) went swimming with dolphins and leopard sharks. Despite Wikipedia telling me that leopard sharks are harmless to humans, I was a wimp and didn’t overstay my welcome in the water.   

A leopard shark at the beach (one of many dozen!) 

Day 6: 

Our last day in San Diego! Our flight was in the evening so we spent the morning in the zoo (a red cell tradition based on what I have heard!). It’s a great zoo featuring giant turtles!   

A giant turtle at the San Diego Zoo. 

Day 7: 

We arrive home in London. Shattered but filled to the brim with the spirit of scientific discovery. Back to work tomorrow because the NHS rests for no haematologist!  

The power of connections

By: Richard Buka

One of the most striking images this year was the publication of the brain of an adult fruit fly – drosophila melanogaster, made up of 140,000 neurones and 54.5 million synapses. The research was conducted by the Flywire consortium, a collaboration of 127 institutions across the globe. The image you see below was achieved by stitching together electron microscopy images using AI to automatically segment neurons. However, these reconstructions needed to be proofread, and this was done through even more collaboration – they outsourced it to researchers and volunteers across the world through an open platform.

So, this work shows the power of connections and network in two ways. Firstly, those 54 million connections between multiple neurones allows a fly, with a brain smaller than a pinhead, to navigate complex environments, process sensory information, learn from experience, make decisions, and live within a social structure. Quite incredible.

Second, the work shows what can be achieved working together. The project was achieved through a collaborative effort from 287 researchers around the world and volunteers from the general public who spent an estimated 33 person-years painstakingly proofreading all the data.

I recently travelled to ASH in San Diego where I had the pleasure of presenting a poster on RAPIDO, HaemSTAR’s audit on the use of reversal agents across the UK. We had over 250 people enter data on this project and nearly 2,500 patients worth of data entered. I estimate this as over 1,200 hours worth of data collection. For one person, this would take about 6 months full-time work, totally unmanageable for one person, but HaemSTAR can do things like this relatively easily. The fly brain work is strikingly representative of what we are trying to do – the consortium that managed to do this, similar to our network, and the power of all those synapses, representative of our network. I’m constantly amazed how much everyone is willing to do for limited personal gain, in the interests of improving care for our patients.

So, what can we look forward to in 2025? We are planning projects that will look at management of high-risk PE in pregnancy, haemostatic management of surgery in haemophilia B, and vascular access in sickle cell disease. MoM-ITP, our study of foetal outcomes in maternal ITP is on-going and looking for more sites. We also have ATOMM, a project looking at the use of apixaban in thromboprophylaxis in myeloma, and a plan for a national audit of the diagnosis and management of HIT. There are quite a few other projects ticking along as well and I am also looking forward to a few publications – RAPIDO, 2 sample rule survey, A2PLS, TXA in HMB survey, high risk PE in pregnancy survey, and others. To get involved, in any of these projects, please head to the website, or just email haemstarnetwork@gmail.com.

Meanwhile, Pip Nicolson and I will continue to do the HaemSTAR podcast, Don’t Just Read the Abstract, and there will be more wonderful webinars in collaboration with the Limbic. I can’t wait to meet with friends and colleagues at the HaemSTAR annual meeting in February and at BSH in April. Please do come and find me, say hello, and let’s discuss how we can work together.

All the best for 2025

Rich

A Deep Dive into the World of Haemostatic Disorders - ISTH Workshop Zagreb

In September 2024, the ISTH legacy fund enabled me to attend the ISTH Workshop on Haemostatic Disorders in Zagreb. It was an enriching and fulfilling experience; one of the standout features of the ISTH workshop was the depth and breadth of the topics presented. The wide range of haemostatic disorders covered was truly fascinating. Leading scientists shared their latest findings on a wide range of topics, from the molecular diagnostics of bleeding disorders to the evolving treatments for haemophilia.

The event wasn’t just about passive listening, there was also enough time for participants to actively engage with the speakers. The sessions allowed me to get more familiar with the latest diagnostic technologies and treatment strategies, ensuring they can be implemented in real-world settings.

It was truly a privilege to be able to share the experience with other health care professionals from around the world. I gained valuable insights into understanding the variations of practice and limitations faced in different countries.

ISTH updates sessions were very exciting, I enjoyed the brief about Ted Warkentin unravelling valuable data regarding the spectrum of anti-PF4 antibody-mediated thrombosis, ranging from classic HIT, autoimmune HIT, spontaneous HIT, VITT to spontaneous VITT. I understood more about triggers for each condition, pathophysiology and the recommended treatment. Although both HIT and VITT share some clinical features - the highly prothrombotic state, high morbidity and mortality rate - the antibodies bind to different epitopes on PF4 and their management differ. It is very important to be aware that rapid immunoassays are unhelpful in diagnosing VITT. So, ELISA is crucial. Bringing this spectrum of disorders into clinicians’ awareness will help in diagnosing and treating conditions that were previously poorly understood.

As with any major scientific event, the ISTH workshop was also a fantastic opportunity for networking. Clinicians and researchers from 48 countries around the world gathered in Zagreb. Many delegates were able to form connections that will hopefully lead to future partnerships and research collaborations.

As the workshop came to an end, one thing was clear: the future of thrombosis and haemostasis research is incredibly promising. With rapid advances in molecular biology, genetic engineering, and drug development, we’re on the cusp of groundbreaking changes in the way we understand and treat clotting disorders.

However, challenges remain. There’s still much work to be done in terms of refining existing therapies, improving diagnostic methods, and ensuring that emerging treatments are accessible to all patients. The ISTH workshop in Zagreb reinforced the idea that global collaboration and continued innovation are essential to moving the field forward.

Looking ahead, there’s no doubt that the momentum generated inspired me to pursue further my interest in haemostasis and thrombosis. I am so grateful to HaemSTAR and the ISTH for funding such an invaluable opportunity. I am looking forward to HaemSTAR collaborating with the ISTH to bring an equally rewarding educational event to our doorsteps in the UK, in the near future.

ISTH 2024, BANGKOK, THAILAND

This blog is a reflection of interesting musings from my recent sojourn to Bangkok, Thailand for the International Society of Haemostasis and Thrombosis (ISTH) annual congress in June 2024. I am grateful to HaemSTAR for the opportunity to have been part of the meeting via the HaemSTAR ISTH Legacy Fund award. 

This was such a vibrant meeting with my interest particularly drawn to a number of interesting and thought-provoking abstracts and talks. With a shameless paediatric haematology bias, I sauntered into venues scanning for paediatric themed updates. I had walked straight in on arrival into a masterclass session on approach to children with thrombosis in the background of inherited protein C deficiency. The challenge of equity of access was evident with a diverse spectrum of attendees either having access to protein C concentrate, fresh frozen plasma or just simply sticking to long term anticoagulation. It was a reminder of the need to have adaptable guidelines and the fact that various regional or national health financing bodies are obviously unlikely to have read an international best practice guideline when allocating resources! 

It was particular reassuring to again see a couple of poster abstracts from across the globe corroborating real world safety and efficacy data on use of rivaroxaban for paediatric VTE as had been previously reported from similar such single and multicentre studies in the UK. This may in future open a discussion into a complete needle free approach to paediatric thrombosis in the future. 

Moving away from thrombosis the encouraging data on safety and efficacy from FRONTIER2 on use of the Factor VIIIa mimetic, Mim8 was of interest. It is positioned as the next generation optimised Factor VIIIa mimetic but it certainly has some lofty heights to aim for as those in the haemophilia community know, there is certainly no recent dearth of options for Haemophilia A. 

Taking a break from the conference site to join in a pharma-organised lovely dinner at the highly recommended Garden of Dinsor Palace in Bangkok was refreshing (thanks to Jessica Sandham, Haematologist at Liverpool!). It was also inspiring as it was a pleasure to dine with experts in the haemostasis field as well as one of haemophilia’s finest researchers, Dr Steve Pipe from Michigan, USA who needs no introduction for his role in the HAVEN trials and Gene therapy trials.  

Back to the conference there were a number of thought-provoking abstracts on display. For example, an abstract on effective implementation of pharmacy led anticoagulation clinics in the DOAC era in a Singapore centre showed good patient experience and was safely delivered. A study on bone health screening in paediatric patients on chronic warfarin therapy caught my attention as this is a poorly discussed issue. In this study from the Nationwide Children’s Hospital and The Ohio State University, both in the USA, the key finding was that a striking 75% of these children were at risk for low bone mineral density potential, making them a fracture risk. This exemplifies the need for more attention to be paid to children on chronic warfarin therapy using a multidisciplinary care approach. 

Overall this was an excellent conference which was not only of huge personal clinical benefit for me but also great for collaboration with colleagues across the globe. I am grateful to HaemSTAR and the ISTH Legacy fund for the opportunity to attend ISTH 2024 in Thailand. 

British Society for Haematology 64th Annual Scientific Meeting

In April 2024 I was delighted to attend the 64th British Society for Haematology Annual Scientific Meeting with the partial financial support of NIHR/ HaemSTAR. This exciting opportunity to attend my first haematology national conference combined several novel experiences: my first visit to the North (Liverpool- I will return!), my first e-poster presentation and my first exposure to non-linear career opportunities. My conference experience kicked off with the Welcome Reception on Saturday evening, where I met colleagues both old and new. We spoke about special interests, varying from digital pathology eclipsing the use of the microscope, to the influence of Lifestyle Medicine on patient experience and outcomes. It was inspiring to learn how senior colleagues have embraced change and refuel their passion for a decades’ long career in haematology. The next morning, the Welcome Address featured a moving performance by the ‘B positive’ choir which consists of singers affected by sickle cell disease. They have previously performed on several high-profile stages, including Britain’s Got Talent and the MOBO Awards. It was a notable effort to ensure that patients with this historically stigmatised disease were spotlighted at the conference. For me, this represented a humbling reminder to clinicians of the potential patients can reach when their disease control is optimised.

The HaemSTAR & TReN lecture was an enjoyable lecture, with the team explaining the origins of HaemSTAR, the power of national audits (including outcomes from the RAPIDO audit) and the long-term vision including HaemTRIAL. Current projects were also discussed. The Nigerian Society of Haematology and Blood Transfusion gave an outline on how they established a collaborative research fellowship, which showcased the dedication and resilience of the team involved. The Dragons Den portion of the lecture was particularly thought provoking. Candidates were vying to impress a panel with a well thought out future research proposal. Although this was a fictional funding opportunity, the candidates revealed how their pilot studies informed their research hypothesis and outlined successful formats to apply for funding for research projects. This was an extremely valuable opportunity for registrars like myself who are considering a research degree to diversify a career in haematology.

During my time at the conference, I was able to present my e-poster to fellow delegates. This was a small scale, retrospective study on the relationship between early diagnosis and treatment of suspected HLH on patient survival outcomes. This was a brilliant opportunity to discuss reasons behind varying regional approaches, complications with histological diagnostic yield (bone marrow aspirate vs. splenic biopsies) and I received constructive feedback on my communication of research findings. I was able to attend a variety of talks including enhancing health and wellbeing (the role of food, exercise and spirituality in enhancing healthcare), obstetric haematology and the management of complex cases, and review of BSH guidelines (including newly diagnosed large B cell lymphoma).

In conclusion, I found attending the conference an invaluable experience. I was able to network with a diverse group of enthusiastic haematologists, explore the different approaches to build a desirable career trajectory and felt inspired by the patient speakers (Be Positive in A Negative situation!). I thank NIHR/ HaemSTAR for supporting my attendance and recommend fellow trainee haematologists to attend conferences- you never know what experience will influence your future career and life choices.

British Society for Haemostasis and Thrombosis - ASM 2024

Earlier this year in January, the ISTH legacy funds gave me the opportunity to attend the British Society of Haemostasis and Thrombosis Annual Scientific Meeting in Belfast.

The experience was eye-opening and was extremely valuable for my personal development as a junior clinician. The travel to Belfast from Sheffield was tumultuous as my flight from Manchester Airport was cancelled due to poor weather. This was further complicated by the fact that I had to make the decision to fly to Dublin and take the trip up north of the border to attend the conference. Nonetheless I was lucky to be able to make it just in time for the Early Career Researcher Session.

The session was extremely insightful as it not only provided the opportunity to network with very inspiring and accomplished haematology trainees, but I was also able to meet clinical scientists and hear about their work and research, and how their work will progress the ever rapidly advancing field of haematology. It was also insightful to appreciate the struggles faced by clinical scientists in their research. The workshop on ‘Building Resilient Leaders’ provided practical advice and tips on how to overcome the imposter syndrome that can plague many of us. This was a great introduction to the conference.

The conference was a great way to see how basic sciences in medicine are integrated to guide medical research and therapeutic advances in the field of haematology. There were various presentations from clinical scientists that were very intriguing, but admittedly it was a challenge for me to fully understand their research. The highlights of the conference for me were the presentations from emerging Fellows, which included fascinating research into and potential clinical applications around von Willebrand Factor levels, Glycoprotein VI and Platelet Factor 4. The case study presentations also showcased some of the rare and complex conditions in haematology, the treatment conundrums each clinical team faced and how they approached and managed their patients’ conditions. During the session I had the opportunity to present a clinical case study on acquired Glanzmann Thrombasthenia complicated by pulmonary embolism. It was daunting to present at the conference, but the learning experience was invaluable.

Overall, it was an amazing experience for a medical trainee to attend the BSHT annual scientific conference, and to appreciate the areas of interest in haematology research, and learning about the integration of basic sciences in clinical research. I would like to thank HaemSTAR and ISTH legacy fund for the opportunity to attend the BSHT ASM.

British Society for Haematology ASM 2024

Thanks to the support of the ISTH Legacy Fund through HaemSTAR, I had the privilege of attending the 64th Annual Scientific Meeting of the British Society for Haematology in Liverpool.

This experience provided me with unique opportunities for professional development, networking, and knowledge exchange in the field of haematology, allowing me to engage with leading experts, researchers, and clinicians worldwide. Through interactive sessions and presentations, I gained insights into the latest advancements, including updates on clinical guidelines, emerging therapies, and challenges in haematology research and clinical practice.

One of the valuable aspects of the meeting was the opportunity to present my research findings conducted at Guy’s Hospital under the mentorship of Professor Claire Harrison and Dr Shahram Kordasti, and exchange ideas with peers and colleagues. The constructive feedback and discussions received during these sessions not only enriched my understanding of myeloproliferative neoplasms (MPNs) and associated thrombosis but also inspired new possibilities for collaboration.

During the session on top abstracts with expert perspective, one presentation particularly caught my attention - a study presented by a colleague from the University of Liverpool exploring the role of fibrinogen in the crosstalk between coagulation and innate immunity. The findings of this study encourage me to further develop my project on Neutrophil Extracellular Traps (NETs) as a key mechanism underlying thrombosis in patients with MPN.

Continuing in the same field, the lecture on cancer-associated thrombosis presented by Professor Ingrid Pabinger-Fasching was not only brilliant but also exceptionally insightful. Her presentation provided a comprehensive overview of the intricate relationship between cancer and thrombosis and offered valuable insights into potential strategies for prevention and management. Her lecture was inspiring, motivating me to delve deeper into this fascinating area of research. Additionally, Professor Raza Alikhan presented the new BSH Guideline on cancer-associated venous thrombosis in adults.

Lastly, the interactive morphology session, including nine different cases, was highly enjoyable. The enthusiasm was palpable from the number of attendees.

I am grateful to HaemSTAR for the opportunity to have been part of the meeting and look forward to applying the knowledge and insights gained to contribute further to the field of myeloproliferative neoplasms-associated thrombosis.

Health inequalities: a call to action

The prompt for this blog was a couple of recent discussions I have been part of relating to upcoming red cell projects in the HaemSTAR project pipeline. They made me think about the NHSBT Blood and Transplant (NHSBT) Research and Development conference I attended in Birmingham last year, where health inequalities was high on the agenda; in fact, the overarching conference theme was ‘through the lens of health inequalities’.

As I found out from the conference sessions, and from The King’s Fund webpages we were directed to, health inequalities can be defined as avoidable, unfair and systematic differences in health between different groups of people. We can think about inequalities in terms of differences in people’s health status like life expectancy, access to healthcare, quality and experience of care, behavioural risks to health (eg. smoking, alcohol) and wider determinants of health such as housing. Differences are often considered by grouping people in terms of socio-economic factors, geographical factors, specific characteristics including protected characteristics, and socially excluded groups. A striking and often quoted example is, of people living in England, those in the most deprived areas have a life expectancy of 10 years shorter than those in the least deprived areas. This extends to an 18 year gap when considering healthy life expectancy.

A particular highlight of the NHSBT conference for me, was the plenary talk by Professor Bola Owolabi, Director of the National Healthcare Inequalities Improvement Programme at NHS England. She called for the need to move from simply describing the problem of health inequalities, to enacting change - a call to action. She explained how things need to be done at a national level and outlined NHS England’s frameworks for tackling health inequalities (the Core20PLUS5 for adults and Core20PLUS5 for children and young people), but also that change can be driven by individuals or groups at a local level. Examples would be setting up a warm space or a peer-support network, and I have subsequently found a useful toolkit for individuals on the British Medical Association website.

Professor Owolabi went on to emphasise the need for an equity drive in research. Without the right questions and patient representation we are limiting the generalisablity of our findings and ability to target interventions for improved future health equity. Things that can be done, she suggested, include having a wider geographical spread of research and development activity, thinking carefully about study exclusion criteria, and making research more accessible and inclusive for all in terms of clinical trial participation. As a start we can think about costs involved in participation, language and cultural barriers.

We have been thinking about how we incorporate this into our red cell projects and we have decided seeking some early patient involvement will help us to improve our plans. Watch this space for more information on getting involved with these projects later in the year and check out the links above for more information on health inequalities.

Reflections from the Main Stage - ASH 2023

The ISTH Legacy fund gave me the opportunity to attend the 65th ASH symposium in San Diego.  On Friday the 8th of December, around the time I was getting over jetlag at the ASH-a-palooza trainee event, the first ever commercial CRISPR Cas 9 genetic therapies were given approval by the FDA for use in Sickle cell disease.  CRISPR has revolutionised basic science research over the last decade and this approval may well represent a watershed moment that accelerates genetic therapy into mainstream practice.  There are two important points about the approval. Firstly, the FDA approved two therapies using the same technology for the same patient group simultaneously. Second, these therapies cost $2.2 and $3 million dollars, respectively.

Fast-forward to Monday afternoon at ASH and these two therapies are being presented in a single oral abstract session.  Given the excitement around the approval, this session commanded much fanfare.  There are around 25000 attendees at ASH and, to quote one of the presenters at another session, a popular abstract might make you feel a bit like Taylor Swift.

The data presented was remarkable with resolution of VOC for the vast majority of patients undergoing therapy, an absence of insertional mutagenesis, and overall very good tolerance of the conditioning.  Seeing these results for a disease that really has seen very little progress is amazing, even in its infancy with small numbers of patients.  As the floor was opened to questions, one of the moderators pointed out the elephant in the room, cost.

This was addressed head on by the presenter, “these patients are worth a whole lot more than 3 million dollars”.  In a slightly heated back and forth, there was a discussion of the potential for cure, the inevitable competition between these two newly approved therapies and comparison other options such as haploidentical transplant.  Classical haematology is now facing the similar questions to those posed in the high-cost world of oncology for several years - What is a therapy worth and what can we afford?

By comparison to our constant wrangling with NICE, in the US, decisions to pay are made by individual insurers.  There is, however, a key difference in sickle cell patients, this patient population is largely not commercially insured, relying upon state based healthcare instead. Medicaid accounts for only 20% of all US healthcare spending and with 100000 patients living with sickle disease in the US, the bill could quickly run into tens of billions.   Clearly the pharmaco-economics have been done by those far cleverer than me, it is estimated that the lifetime healthcare costs of sickle cell disease in the US are $5million, not taking into account several million of lost economic costs.  So the argument goes, we spend less money on this than we would over a patient’s life.  This disease, however, sits at the junction of social deprivation, race and disease.  There is a litany of things that investment would improve for these patients and their communities. Is $3million for gene therapy that is not definitively curative, with the risks of myeloablation, the best way to improve the lives of these patients? 

Since returning from ASH I have been asked by patients and their relatives about when these therapies will be available here.  Seeing the desperation in the patients and parents faces during another admission interrupting yet another university term or workday, I do not want to be the one to put a price on hope.  Behind the scenes negotiations may lead to NICE approval with the UK paying a substantially reduced cost.  The questions of value and alternatives, that I heard in the hall at ASH, however, will still be ringing in my ears.

It really is the biggest stage in haematology and I want to thank the ISTH and HaemSTAR once again for the opportunity.

65th ASH Annual meeting - San Diego

Through the ISTH legacy fund, I was given the opportunity to fund my attendance at the 65th ASH Annual meeting, held in San Diego.  

As my first ASH conference, the experience did not disappoint. The day before the conference officially started, I attended the TMA Workshop, hosted by the USTMA and UK TTP Registry. It turned out to be one of my favourite events where I felt the semi-informal atmosphere was key to encouraging lively discussion between world experts in TMAs and without falling into cliches, watching them debate the nuances of diseases that I hadn’t appreciated previously was inspirational. It was also enlightening to learn about the contribution of organisational barriers or health policy to the differences in clinical practice. There were also case presentations by US and UK trainees & newly qualified consultants; and this was a great opportunity to meet others with a similar level of experience with whom I shared common interests.  

Another highlight of the conference was attending the Ham-Wasserman lecture, where the speaker is an individual from outside of the US, who has made a major contribution to the understanding of an area of haematology. The lecture was presented by Professor Andreas Greinacher on thrombotic diseases caused by platelet-activating IgG antibodies against PF4. Professor Greinacher wove a compelling narrative, incorporating both basic science and clinical cases, beginning with the familiar heparin-induced thrombocytopenia (HIT) before moving onto the much-publicised vaccine-induced immune thrombotic thrombocytopenia (VITT) and finally, highlighting the existence of VITT-like disorders identified in patients with severe acute thrombosis and thrombocytopenia, without prior heparin or vaccine exposure, but associated with infection in many cases. His lecture just preceded the timely update of the BSH guideline on the diagnosis and management of HIT at the end of December. 

The scale of ASH is immense: although, I initially had harboured some reservations that there would be sufficient non-malignant sessions across all days of the conference, I was mistaken as every day there were multiple sessions covering the gamut of non-malignant haematology and occasionally, I had to choose between sessions. I also had the excellent (yet nerve-wracking!) opportunity to present at the Thrombotic Microangiopathies oral session and to discuss my findings with others after the session.  

Apart from the clinical and science sessions, there were also sessions aimed at career development for trainees by subspecialty and despite admittedly having a US bent to them, they still provided general advice that was helpful and were also an interesting insight to their training pathway. In addition, there were a number of networking events that one could attend; one for Women in Haematology and one for the Haemostasis and Thrombosis Community in particular caught my eye.  

Overall, you are spoilt for choice at ASH, and I could not attend everything that I was interested in! I had an incredible time there and I would highly recommend that all haematology trainees should experience it at least once so I’m very grateful to HaemSTAR for supporting my trip. 

HaemSTAR Chair's New Year Message

Writes Richard Buka, HaemSTAR Chair

It’s been a whirlwind six months since taking over as Chair from Pip Nicolson. Leading a fluid, dynamic organisation like HaemSTAR is both a challenge and an opportunity and I’m really looking forward to 2024 and beyond.

In 2023, we added some great talent to our committee, including Olga Tsiamita, Stephen Hibbs, and Lottie Hickman. These additions make a real difference and each committee member is now driving important projects.

ISTH Legacy Funds

My highlight of 2023 has to be the awarding of nearly £30,000 from the ISTH London 2022 Legacy Fund. We’re putting this to great use with £20,000 allocated to travel grants and £10,000 for funding a HaemSTAR fellowship in collaboration with the Nigerian Society for Haematology and Blood Transfusion (NSHBT). This project is driven by Stephen Hibbs, with help from Imelda Bates, and we will be appointing two Nigerian haematology trainees as fellows in the first part of 2024 with the intention of facilitating research projects in Nigeria. We’ve also been able to invite Omalade Awodu, President of NSHBT to BSH to speak in the UK-TReN – HaemSTAR session.

Education

We’ve also introduced some educational offerings and have now hosted three webinars in collaboration with the limbic. So far, over 250 people have attended the webinars and in 2024 we will welcome talks from Suthesh Sivapalaratnam (Friday 19th January, 0830), Bernard Lämmle, Tom Bullock, Simon Stanworth and more to be confirmed. Previous talks are available on demand. Pip and I have also been recording a podcast focusing on advancements and critical appraisal in non-malignant haematology with the first episode to launch on 8th January.

Projects

Despite all these exciting projects, research and audit are our raison d’être, and we have ploughed ahead with several. The highest profile has been RAPIDO, a national audit of reversal agents for DOAC-associated bleeding. The project has over 300 collaborators entering data and has collected data on around 2,500 patient episodes including about 300 where andexanet alfa was given. Data collection closes on 5th January. We will spend a few months analysing the data and writing up with the intention of submitting an abstract to ASH 2024 with a manuscript to be submitted by the end of the summer.

Upcoming projects

I’m particularly excited about the projects coming down the pipeline. Lorna Cain, Christina Crossette-Thambiah, and Stephen Hibbs have been leading a haemoglobinopathy group that is working on, among others, a project looking at the problem of vascular access in sickle cell disease. Eman Hassan has been working on the use of tranexamic acid in anticoagulant-associated heavy menstrual bleeding, with a clinician survey recently completed and gathering 102 responses. Giulia Simini, Sajida Kazi, and Gill Swallow have been developing a project to look at the management of maternal pulmonary embolism including the use of thrombolysis and catheter-directed thrombolysis. This will start with a survey of centres to assess access to catheter-directed thrombolysis, and we will collaborate internationally with groups in Italy and the USA. This survey will come out in January 2024. Olga Tsiamita and Nick Fordham are working on an audit of neonatal thrombocytopaenia management with a data collection form now completed and ready to launch. Phil Weir and Marquita Camilleri are planning a project to look at the use of apixaban in thromboprophylaxis in myeloma. Again, this is in the later stages of planning and the team are looking for funding. Finally, we will be supporting Rupen Hargreaves with his exciting project investigating the occurrence and type of thrombosis in MPN.

Careful management of the HaemSTAR resource

I’m acutely aware that HaemSTAR collaborators are a finite resource. We cannot simply stack-up project after project, expecting people to contribute. This is why we are carefully optimising our workflow and crafting a package of projects that will appeal to different people. That said, we will always look to support creative, enthusiastic clinicians (juniors and consultants) to develop and deliver their projects. However, we are dedicated to ensuring fair recognition for each and every person who contributes to a project with a commitment to collaborative authorship.

HaemSTAR Annual Meeting – 5th February 2024

2024 is going to be a huge year for HaemSTAR and I am grateful for all your enduring support. If you are able to, please come to the HaemSTAR Annual Meeting in Birmingham on Monday 5th February 2024. Attendance is free and importantly, the meeting is tagged onto the ASH/ISTH non-malignant headlines meeting on the following day at the same venue. Whilst most delegates have to pay for this, non-consultant clinicians attending the HaemSTAR day can attend this for free by emailing sophie@hartleytaylor.co.uk once you have signed up for our day.

Blood sucking demon foetuses: women's health, evolution, and iron deficiency

Writes Dr Richard Buka,

Dr Angela Weyand is a plenary speaker for the HaemSTAR annual meeting - Feb 2024

Women’s health is going to form the focus of much of what HaemSTAR do in the coming years. For our HaemSTAR Update Day in Birmingham on 5th February 2024, we’re going to be welcoming Dr Angela Weyand as a plenary speaker - her work is discussed below.

We’re also doing some exciting projects. The first centres on the idea of giving tranexamic acid to women who are starting anticoagulation for VTE with the idea of reducing menstrual blood loss, and improving quality of life. We’re starting this with a survey.

The second project is called MaTrOn. The Maternal Audit on ThRombolysis Outcome and DecisioN will look at the use of thrombolysis for pregnant women with venous thromboembolism. Again, this will start with a survey and then we will be gathering retrospective observational data on a national scale.

Anyway, on with the blog.

Eve: How 200 years of evolution shaped the female body. Cat Bohannon

This month, I’ve been listening to a brand new audiobook that gives a unique take on human evolution. Cat Bohannon’s ‘Eve, How The Female Body Drove 200 Million Years of Human Evolution’, is a fascinating exploration of mammalian development that puts women at its centre.

It’s full of those “Oh wow!” moments and really changes your perspective. It begins with explaining how medical research is dominated by experimentation on males - male rodents are used as controlling for menstrual cycles is difficult, and makes science more expensive. She goes on to talk about the evolution of milk - did you know that egg laying mammals like the platypus don’t have nipples, with milk instead just sort of oozing from the torso. Nipples make feeding a lot more efficient.

Perhaps the most powerful idea is pinning the success of hominin species on the practice of gynaecology. She includes a whole range of practices under the gynaecology umbrella - from peer-assisted birth, to how primates seek out plants to consume that reduce fertility or induce miscarriage.

The high prevalence of iron deficiency

A renewed focus on women’s health that transcends medicine is long overdue and this is certainly true in haematology. Take iron and anaemia for example, women and girls are much more likely to suffer iron deficiency, which is poorly treated and impacts quality of life. Writing in JAMA earlier this year, Angela Weyand and colleagues found the overall prevalence of iron deficiency (ferritin <25 ng/mL) in American women and girls from age 12 to 21, was 39% and, 17% (ferritin <15 ng/mL) and 78% (ferritin <50 ng/mL. The overall prevalence of iron deficiency anaemia was 6.3% (Hb <12g/L). Iron deficiency, even without anaemia, can cause symptoms including tiredness and poor quality of life.

This got me thinking. What’s the evolutionary perspective on this? Has nature selected for iron deficiency - is this such a difficult problem to tackle?

Tonsillitis

My wife recently had a bout of tonsillitis. It left her in bed for three days with fever and horrible pain. Curiously, she’s not supposed to have any tonsils as they were removed when she was a kid. Nevertheless, when she was seen by the emergency out of hours service, strep throat was diagnosed and she was given some antibiotics. I’ve no doubt that these were necessary, and she quickly recovered.

This came out of the blue and I started thinking about how this came about. We had spent the preceding Sunday at a kids’ party in a soft-play – well known melting pots of disease. She’s otherwise a healthy 30-something, just a touch iron deficient probably because a) she’s a woman, and b) she’s had two children in the last three years and is breastfeeding the youngest. She started taking oral iron supplements again a couple of weeks before this came on.

Rates of iron deficiency around the world can be even higher than in the JAMA paper. Globally, anaemia affects 30% of women, and 40% of children rising to 60% in Africa. The vast majority of this is caused by iron deficiency. If you’re interested, there are loads of statistics on the WHO website.

Is this all nutritional? This is certainly a major causative factor. But even so, humans have evolved to thrive with scarcity of resources. It doesn’t make sense that iron deficiency should be so common unless it exerts a survival advantage in certain conditions.

Evolution and menstruation

We have evolved curious traits that, if we just think of iron deficiency as being bad, make no sense. For example, the volume of blood lost in menstruation varies widely among different species. Humans lose a lot of blood- an average about 80 ml.

This is really rare in mammals - only a handful lose this amount of blood. Most mammals simply reabsorb the material. There are a few possible explanations for this trait.

One, which has been discredited, is that this is a mechanism of cleansing the reproductive tract but there’s no evidence that more pathogens are present before or after menstruation. Another crap theory is that women synchronise periods so that all the men can get busy doing “other stuff” for that week.

“Bloodsucking demon foetuses”

In Eve, Cat Bohannon suggests that periods are a survival mechanism. Pregnancy is a stalemate between the foetus trying to hoover up as much nutrition as possible against the uterus trying to protect the mother. Building up the endometrium prior to a fertilised egg being known about is rare but evolved three times - in higher primates, elephant shrew, and some bats. The book states that “human women menstruate because it’s part of how we survive our bloodsucking demon foetuses.” By building up the endometrium prior to an egg being fertilised means that uterine defences can be dug early.

A further theory, not discussed in Eve is to do with a possible evolutionary benefit for iron deficiency. Excessive menstrual blood loss could be an adaptation to enable iron loss and maintain a state of iron deficiency, thus protection against infection.

Being able to better survive infection is often a strong driver of evolution. Many bacteria thrive on iron and the body can respond by reducing available iron which, in extended infections or inflammatory diseases leads to anaemia (anaemia of inflammation). This theory is discussed in detail in an intriguing review: Nutritional iron deficiency: an evolutionary perspective.

A good example of this is the link between intravenous iron and infection. A recent analysis showed that the number needed to treat for IV iron to lead to a 2 g/L rise in haemoglobin is 5 and to prevent transfusion was 36. Conversely, the number needed to harm – to cause infection was 62.

Plague

The drug desferrioxamine which is used as an iron chelator in people with iron overload comes from the bacterium streptomyces pilosus. The bacterium uses it to hoover up iron in its vicinity. A well known side effect of desferrioxamine treatment is sepsis caused by Yersinia enterocolitica. If you’re thinking that this infection sounds familiar, it should be - Yersinia enterocolitica is related to Yersinia pestis – the plague bacterium (and Alexandre Yersin is my favourite scientist of all time).

Yersinia enterocolitica can’t produce its own siderophore, molecules that help bacteria sequester iron. In the gut, it is able to use other bacteria’s siderophores and can cause enterocolitis. It rarely causes septicaemia except in the case of people taking desferrioxamine – as it can take-up iron bound to this in the blood stream.

A reminder of the close link between iron regulation and immunity is the HFE gene. This gene codes for a protein that influences iron absorption by modulating the expression of hepcidin. It is located on chromosome 6, close to the major histocompatibility complex (MHC) genes. Mutations in this gene cause haemochromatosis when inherited in a homozygous manner but the benefit to being a heterozygote is unclear. One might imagine that it would provide some advantage by boosting iron levels and therefore protecting against anaemia, especially in populations where dietary iron was scarce. Although this is a compelling argument, there is not much actual evidence for this; C282Y heterozygotes don’t have improved iron absorption. Another possibility is that the mutation may have in fact offered some protection against diseases including malaria through a variety of mechanisms.

Conclusion

Away from my digression into plague and haemochromatosis, I’ll come back to the main point of this piece: women’s health. We just have to accept that the way that women and girls experience and perceive the world is different to that of males. This is especially pertinent in healthcare where the experience of illness and pain is poorly studied in women. All of this needs to be viewed in the context of sexism and misogyny, both for patients and those of us that work in healthcare systems. The more we become aware of how important gender is on the way that we perceive the world, the more we can understand it, empathise, and improve lives for the better.

If you want to read more from Rich, follow his blog, Classical Compass or check out his podcast, ‘Don’t Just Read the Guidelines’ on all major platforms.