Why are you trying to better understand takotsubo, Kathryn?
I’m a geneticist and data scientist at Imperial College London. I’ve been working to better understand genetic variants involved in cardiomyopathies and heart structure and function. A few years ago, I attended Cardiomyopathy UK’s annual patient conference in London. There, I met a group of individuals diagnosed with takotsubo, who noted that they didn’t have a trigger/stress event that is usually thought to cause the condition. They wanted to be involved in more research to better understand takotsubo. Once I started studying takotsubo, I was surprised at the lack of understanding and research for this common condition, and I think we can better understand what causes it in our research group with the help of people with takotsubo. I am also working with a fantastic group of experts, the MINOCA workstream as part of the NIHR-BHF Cardiovascular Partnership. This UK-wide collaboration will better our understanding of takotsubo in the near future.
Takotsubo
Takotsubo is a sudden and severe heart condition. While under-recognised, it affects 1/20 women suspected of a heart attack and men too. It mainly affects women over 65 years old. As symptoms closely resemble a heart attack (chest pain, breathlessness, ECG reading changes and biomarkers), patients are rushed into treatment for an emergency heart attack. However, when doctors perform a coronary angiogram to see if the main blood vessels of the heart are blocked, causing a heart attack, they usually find that they are not. A takotsubo diagnosis is eventually made through the exclusion of other conditions (this is not good enough for patients and clinicians), with the hallmark being recovery of the major measures of heart function within weeks – that doesn’t happen to other heart attack-related conditions. This “recovery”, however, is only partial; recurrence of takotsubo is common, and many patients have long-term problems after the first hospital visit.
Takotsubo is very poorly understood. We do not know why it happens, why it mainly affects women, or which patients are most at risk of complications. There are no specific treatments or preventative measures. No therapies have been shown to reduce recurrences or any other major cardiovascular events. There is no national picture of how this is managed across the NHS. It is no longer thought to be a cardiomyopathy, but an “acute myocardial ischaemic syndrome”.
Our research will change this
Right now, we are analysing data from the NICOR Myocardial Ischaemia National Audit Project (MINAP), a nationwide NHS database that records every hospital admission for suspected heart attacks in England and Wales. Since many takotsubo patients first appear as suspected heart attack cases, MINAP contains one of the largest collections of real‑world information on this condition (over 5,000 individuals). Uniquely, clinicians were asked to fill in a voluntary discharge questionnaire when the patient was diagnosed with takotsubo. We have access to the data from this questionnaire, and it includes information since 2013 on over 2,000 individuals diagnosed with takotsubo.
Using this unique national dataset, we will examine:
- what kinds of emotional or physical stress triggers are most common, and whether they are likely a reason for this diagnosis or are as common in the population.
- which patients are most affected (e.g., age, sex, medical history).
- symptoms and heart scan findings.
- how patients are treated in hospital, including medications and specialised cardiac support.
- how often serious complications occur, such as abnormal heart rhythms or blood clots.
- how many patients experience repeat episodes and have a family history of takotsubo.
- We will also compare takotsubo patients with others admitted with suspected heart attacks to better understand how the groups differ, and how NHS services might be improved to support the right patients at the right time, ultimately impacting our understanding of the condition for clinicians globally.
The results will help clinicians recognise takotsubo more quickly, avoid unnecessary invasive procedures, and provide more personalised care.
Insights from this project will improve care pathways, support NHS decision‑making, provide targets for prevention and treatment, and address sex biases in cardiovascular care quality. By improving the understanding of this under‑recognised condition, we aim to refine diagnosis, shorten hospital stays, and ultimately improve the outcomes for thousands of people each year who experience this misunderstood heart syndrome and are initially managed with the wrong condition.
What’s ahead? Genetics as a tool to guide biological understanding
This will lay the groundwork for our future research into the biological causes of takotsubo, including recruitment, genetics and imaging studies. Genetics can help us identify the cause of takotsubo and target therapeutics for this condition if it is similar to other cardiovascular conditions. It is a useful tool, and we know now most of the genes that are involved in keeping the heart beating in the left ventricle. Do these genes influence the risk of takotsubo as well as other conditions such as cardiomyopathies? This understanding will help us find genetic markers to identify people much earlier who are at risk of takotsubo.
I have takotsubo, how can I get involved?
We are recruiting takotsubo-diagnosed individuals and their family members to the HeartHive – an online portal where people can sign up to participate in research studies (thehearthive.org). We will post takotsubo studies, and those who have signed up can get involved if they like. This may include opinions on future research plans, surveys, or participation in a future genetic study. The Cardiomyopathy Study includes takotsubo, is already up on the Heart Hive and will better help us understand takotsubo compared to other cardiomyopathies. For those willing to get involved in a genetic study, saliva kits will be sent to UK individuals with takotsubo for DNA sequencing. This will help us finally understand takotsubo through better research.
Steps to register and fill out the survey: