How Anthony Nolan’s research is improving transplant equity so that one day, every patient can survive and thrive.
A stem cell transplant can be a lifesaving treatment for someone with a blood cancer or blood disorder. But we know that not everyone has the same chance of finding a matching donor, or the same chance of surviving and thriving after their transplant.
While there are many factors behind each patient’s experience of a stem cell transplant, research shows a patient’s ethnicity can be linked to their chance of finding a matching donor, and the success of the transplant. Other factors like socioeconomic status may also be linked to disparities in transplant outcomes.
We don’t yet fully understand all the reasons behind these inequities. But research is helping us build a more detailed picture of the issues and pursue strategies to make transplants more accessible for everyone who needs them – regardless of their background or circumstances.
What's causing transplant inequities?
When a patient needs a stem cell transplant from a donor, doctors try to find a donor with a matching tissue type – essentially the unique genetic makeup of an individual’s immune system.
The better the match, the more likely the patient will recover well from their transplant. However, we know that UK patients from minority ethnic backgrounds are more likely to have rare tissue types, which can make it harder to find a fully matched unrelated donor. This can mean they need to wait longer for a transplant, or are more likely to experience side effects like graft versus host disease (GvHD).
It’s important to note that ethnicity and race are not genetic, but social categories. Instead, patterns of genetic inheritance seen across the world can often overlap with peoples’ self-described ethnicity, and some of these genetic make ups are less common than others.
Even if patients from minority ethnic backgrounds have a genetically well-matched donor, our research shows they are still more likely to suffer higher rates of complications compared to white patients – meaning the genetic matching disparity is not the only source of inequity for these patients, and we must thoroughly investigate the causes of this.
Beyond ethnicity, we expect that other factors such as socioeconomic status may be connected to transplant inequities. Our research aims to identify and address all forms of inequity in stem cell transplant provision and care.
We are still in the early stages of understanding the sources of these healthcare disparities, which is why we must urgently fund research into discovering the causes of these inequities and developing new strategies to address them.
Above: Our research shows patients from minority ethnic backgrounds are more likely to experience fatal complications after a transplant from an unrelated donor, compared to white patients.
Anthony Nolan's research into transplant inequities
We are uniquely positioned to lead research on stem cell transplants because of our long experience in the field, and our close connections to patients and transplant centres. Our teams of researchers are world-leading and have the opportunity to bring findings to the transplant community very quickly.
Equity is one of Anthony Nolan’s three key aims in our organisational strategy, and as such is a key focus of several of our research projects.
Here’s a summary of some of our current research projects that have the potential to improve equity for all patients who need a stem cell transplant.
Recruitment strategies to diversify the global register
One strategy to address the inequities in finding genetically well-matched donors for all patients is to adapt the way we recruit donors. In the UK we already work to recruit more donors from minority ethnic backgrounds, who are more likely to possess relatively uncommon tissue types. But we are also investigating how international recruitment strategies are more likely to find well-matched donors for patients whose tissue types are less well represented on the global register.
A recent international study we collaborated on revealed that focusing new recruitment drives in South Asia and Sub-Saharan Africa would be a good strategy to find more well-matched donors for patients around the world with less common tissue types.
Currently, we are collaborating with the largest stem cell register in India, DATRI, to investigate new recruitment strategies that could potentially diversify the global donor pool and improve matching inequities.
This DATRI Project is a three-year pilot project that aims to recruit 10,000 additional donors from specific regions of India to the pool of international stem cell donors. The project is using cutting-edge data technologies developed by Anthony Nolan researchers to predict which areas in India we are most likely to find donors with tissue types that are less well represented on the global registry. This could theoretically help us recruit donors who are more likely to be matches for patients both in India and around the world.
The project has so far found donors for five Indian patients, and identified several potential matches for international patients, which is encouraging considering this is within a year of starting recruitment. The project has also helped us better understand how we can use similar genetic analysis of other populations in the future to help patients who are currently less likely to find a match.
Targeted recruitment strategies like this could become an important strategy in improving equity around the world, by focusing recruitment drives in regions where donors are more likely to have tissue types that are not well represented on international registers.
You can read more about the DATRI project here.
Above: senior postdoctoral bioinformatics research scientist Dr Michaela Agapiou presenting preliminary results from the DATRI project at the EFI 2024 scientific conference.
Reducing the need for a perfect match
While a fully-genetically matched donor is the gold standard in stem cell transplants, many patients will never have access to a fully matched donor, even with massively expanded recruitment. This is because some people have tissue types that are so unique, they may be the only person in their country or even the world with that exact tissue type.
This is why some of our research aims to provide alternatives for patients without access to a fully matched donor, including treatments that could reduce the risks of side effects and improve outcomes for all patients with mismatched donors.
Specialised cells from the umbilical cord
Transplants using umbilical cord blood are an important option to improve equity, as they can be carried out with a lesser degree of matching compared to other types of stem cell transplant.
In addition to this, the umbilical cord itself contains cells called mesenchymal stromal cells (MSCs), which researchers in our Immunotherapy team are investigating as a potential treatment for a major transplant side effect, graft versus host disease (GvHD).
MSCs have anti-inflammatory properties, meaning they could potentially be used to combat the inflammatory effects of GvHD. This could help address healthcare inequities by improving transplant outcomes in patients with less well-matched donors, who are at a greater risk of developing GvHD.
Natural killer cells
Another useful type of cell that can be found in umbilical cord blood is the natural killer cell – a type of immune cell that can fight cancer. Our Immunotherapy team are researching ways we can use these cells to treat blood cancer relapse, or as a supportive therapy alongside stem cell transplants.
An advantage of natural killer cells is they don’t require genetic matching to the patient, meaning they could become an attractive cell therapy option regardless of the tissue type of a patient – meaning this should make an impact in reducing inequities connected to ethnicity.
The potential of PTCy
Around the UK and the rest of the world, many organisations are also working to address healthcare inequities in stem cell transplants.
One major area of research is a treatment called post-transplant cyclophosphamide, or PTCy. This is where a medicine called cyclophosphamide is given after a stem cell transplant to help reduce the risk of GvHD, especially in patients who don’t have a fully matched donor.
We don’t currently perform research on the use of PTCy ourselves, but research from the US has shown that PTCy can give patients with a mismatched donor the same chance of surviving as patients with a well-matched donor. This could drastically widen the available donor pool for patients with rarer tissue types, so could make a huge impact on healthcare inequities.
Several transplant centres in the UK have started using PTCy in specific cases, but there is more work to do to understand how to safely and effectively introduce it more widely across the UK. As a key advocate for stem cell transplant patients in the UK, our focus on PTCy is to help answer questions around its potential use in the UK and facilitate its uptake by clinicians in the most effective and appropriate way for patients.
Campaigning for cell therapies
Other major work happening across the world includes the development of new cell therapies that can reduce the need for full tissue type matching, or even the need for a stem cell transplant at all. Some cell therapies, including CAR-T therapy, involve genetically modifying the patient’s own cells to treat the underlying cause of disease. This avoids the need to find healthy cells from a genetically unrelated donor.
While therapies like these are currently quite expensive or inaccessible, we are campaigning to change government policies and reduce the cost of the development of therapies like these.
We are building on the momentum from the success of the Casgevy campaign for beta-thalassaemia and sickle cell disorder to illustrate the need for and impact of wider access to breakthrough cell and gene therapies, especially for patients from minority ethnic backgrounds who may have more limited treatment options.
Improving recovery after a transplant
Our Patient Reported Outcomes research aims to better understand the experience of patients during and after their transplants.
We know a transplant doesn’t end on the transplant day, and patients can experience years of recovery which can dramatically impact their quality of life. But not all patients start on the same footing for their recovery. Financial status, caregiving responsibilities, or even location in the country can all influence how patients access follow-up care and the types of support available to them over time – meaning that patients may have different experiences of recovery following their transplant.
Our SEQoL study (which stands for Scaled collection of socioEconomic and Quality of Life data) is a landmark UK project, aiming to better understand the impact of a transplant on patients’ wellbeing and quality of life. It will collect patient experiences like those mentioned above to give us a more complete picture of how a transplant can affect all areas of life and wellbeing during recovery.
Alongside this, our work looks at the financial pressures that patients and caregivers can face after transplant. We aim to gain new insights into who may be most affected and where more tailored support and better shaped healthcare policies could help reduce inequities and improve recovery over time.
SEQoL will evaluate if socioeconomic factors or ethnicity can be connected to changes in quality of life after a transplant. This could help identify areas of transplant care that must be improved to address inequities.
You can read more about SEQoL here.
What you can do
To really make an impact with this research, we urgently need more funding and support. You can donate here to help us continue our essential research.
Together we can work towards a future where every patient can access the best possible treatment.