The future of registries in the UK came into focus during an afternoon session at SOHO UK with Priyanka Mehta, MBBS, MD, FRCP, FRCPath, a consultant haematologist at University Hospitals of Bristol and Weston NHS Trust, leading a discussion on the recently launched MyeCare registry for acute myeloid leukaemia (AML). Developed with the UK AML Research Network, MyeCare is the first prospective registry for patients with AML in the UK.
In an interview with SOHO Insider, Dr. Mehta reflected on how her experience running clinical trials led to an interest in registries, culminating in the launch of MyeCare in July 2025. She also discussed how valuable it has been to launch the registry in collaboration with Accelerating Clinical Trials (ACT), a nonprofit haemato-oncology trial delivery vehicle supported by £5 million in funding from Cure Leukaemia, Anthony Nolan, and NHS Blood and Transplant.
Real-world registry data complements clinical trial data
Asked about the impetus behind the MyeCare registry, Dr. Mehta cited the fact that most patients who might benefit from the treatments in clinical trials never get access to those trials.
“If you had 100 patients, only 10 patients would go into clinical trials,” she told SOHO Insider. “But clearly there is a lot to learn from those other 90 patients. Every experience should count, every patient should count in our learning. Whilst we are so focused on clinical trials, there is a lot to be learned from real-world data as well, because real-world data complements clinical trial data.”
The increasing reliance on registry data is even becoming apparent at regulatory bodies such as the FDA, EMEA, and NICE, she observed. Whereas drug approvals were traditionally based strictly based on phase 3, randomized, controlled trials, these bodies are now “waking up” to the need to incorporate real-world data into the process as well.
“The regulatory bodies are posting rules for real-world data on their websites,” she noted. “They have now started acknowledging that real-world data can mean so much more to patients in terms of approving drugs or even the post-marketing authorization—what we in clinical trials call ‘phase 4.’”
Prospective study approach requires strict quality control
When it comes to data collection, Dr. Mehta and her ACT colleagues are taking a “prospective study” approach—in other words, collecting patient data, samples, and outcomes for the purpose of making it available in the future for questions that have yet to be formulated. This prospective approach is quite different from designing a clinical trial aimed at evaluating a specific drug or answering a known question.
“We’ve been very rigorous about collecting clinical data from patients as well their laboratory data and genomic data, and then following up, not just for clinical outcomes, but also quality of life and patient-reported outcomes,” she said. “We hope to also start bio-banking very soon, so that the registry forms a very robust infrastructure for all kinds of research in the future, both longitudinal and translational.”
She added that the prospective study approach requires strict quality control, acknowledging that past registries have not always had a good reputation in that area.
“I have some reservation about calling MyeCare a ‘registry’ because of the word’s past association with ‘dirty data’ as we call it,” she said. “The trouble is in the past registries were thought of as an Excel sheet that goes around with very big data gaps and holes, and the data were not reliable per se. Our aim is to make sure the dataset is robust so that it can be used for all kinds of purposes, including single-arm trials, which is what the FDA is also talking about now.”
Another advantage of a large, reliable dataset is that it can serve as a “hypothesis-generating” resource for answering questions that clinical trials cannot. This point is particularly important for a heterogeneous disease like AML, she noted.
“Clinical trials may not have been able to answer, for example, questions about patients in a specific age group or patients who have altered kidney function or liver function,” she said. “We can find it very difficult to derive some results from small subgroups of patients. But with a larger database, you might be able to make that subgroup a little larger and be able to answer those questions and that adds to the reassurance or new signals about where these drugs may be used.”
Progress of the MyeCare AML registry
Having launched in July 2025, the MyeCare registry is currently in a growth phase, with an emphasis on opening sites across the UK and aiming for national coverage. Strict policies on ethics and patient consent act as constraints on rapid growth, Dr. Mehta noted. Nonetheless, she is hopeful that the registry’s network will soon expand to include smaller rural sites across the UK as well as large urban teaching centres.
“We really are delighted with the progress we have made to date and are conscious that the only reason we have been able to set up and launch the MyeCare Registry so quickly is because of generous support from a number of charities, including Leukaemia UK, Anthony Nolan, and Cure Leukaemia, as well as unrestricted educational grants from the pharmaceutical sector,” she said.
“We’ve opened about nine centres so far, and we’ve already recruited 60 patients,” she said. “It’s just very early stages, but the momentum is already picking up, and we’re hoping to recruit about at least 300 to 400 patients every year as we open more centres.”
Although not every affiliated centre will be able to open clinical trials, many smaller centres have cited “sense of community” as the reason they joined the registry, according to Dr. Mehta.
“I think the biggest outcome so far is getting the community together,” she said. “Suddenly, the whole country, every AML-treating clinician, acknowledges and is excited to contribute to this kind of data exercise because it’s all about bringing about standardisation of care to ensure there is equity of access to treatment and transplants. When these clinicians are accessing the registry and entering data, they begin to feel that they’re part of something big. It’s a resource for all clinicians interested in AML.”
Dashboarding and equity of access
Dr. Mehta observed that there is currently a high degree of variation across the UK in terms of tests that are being done, treatments that are being offered, and access to transplant, which for many AML patients is their only hope for a cure.
“Only about 30% to 40% of our patients who would benefit from transplant actually get a transplant,” she noted. “Therefore, we wanted to address this whole issue of equity of access to treatments and transplants—the socioeconomic factors and geographical distribution. There are very good scientific rationales for why some patients do well and some do not, but there can also be socioeconomic rationales.”
Dr. Mehta hopes that the MyeCare registry will enable participating centres to engage in what she calls “dashboarding,” an interactive process in which a centre compares its performance to its peers to identify any gaps, areas for improvement, or barriers to access.
“Say you have a particular type of AML cohort that you’re interested in, maybe over age 60,” she said. “They can see what the performance of the over-60s is in their centre and compare the outcomes to national standards and national curves. Maybe less than 30% of their over-60s go to transplant, whereas the rest of the country is getting more than 40% of their patients to transplant.”
The dashboarding functionality will also support the sharing of best practices within the community.
“Most hospitals struggle with capacity,” Dr. Mehta said. “At some hospitals, the patients come in for subcutaneous injections, whereas others manage to deliver these treatments in the patient’s home. This can also be very facilitatory in terms of sharing good practice. It’s all about improving care at every centre and making it equitable.”
Powered by Dendrite
To implement the MyeCare AML registry, including its data collection and dashboarding features, ACT turned to Dendrite Clinical Systems, a London-based data management company that provides clinical databases and analysis software for hospitals.
Dendrite has implemented over 200 registries across a wide range of medical specialities around the world. The company provides GDPR-compliant servers as well as tools for data visualisation, data analytics, reporting, and automated data capture directly from patients’ smartphones.
SOHO Insider interviewed Dr. Peter Walton, the managing director of Dendrite Clinical Systems, to get his take on the MyeCare AML registry and the future of registries in the UK.
“It’s been a huge pleasure working with Professor Charles Craddock and his team at ACT to build the MyeCare UK AML registry,” said Dr. Walton, who trained in medicine at Cambridge University and St. Thomas’s Hospital and then entered the London Business School MBA programme before co-founding Dendrite in 1993.
“The process is that the ACT team recruits new centres to join the registry, and they send us the details of when they feel those centres are ready to join,” he said. “Once they join, we run a registration help desk where we set up users to have access to the registry. Each user can only see their own data; they can’t see anyone else’s data.”
Once a centre joins a registry, it receives various reports and analysis, Dr. Walton said.
“You can see Kaplan-Meier event-free curves and survival curves for different subgroups,” he said. “It then becomes much easier for a clinician to understand, not in the clinical trial world, but in the real world, what the expected outcomes might be for different patients with different patient profiles under different treatment programs.”
Like Dr. Mehta, Dr. Walton sees registries as functionally complementary to clinical trials.
“The clinical trial will give you the answer as to efficacy and safety, whereas the registry will give you a descriptive picture of what’s going on for a whole population of patients with a particular diagnosis,” he said. “You could call it a hypothesis generator if you like. It tells you where you should do trials and where you shouldn’t.”
Dr. Walton noted that registries are traditionally supported by major pharmaceutical companies that are trying to recruit patients into particular clinical trials for new treatments according to specific patient profiles.
“The registry can automate the identification of those patients,” he said. “It’ll immediately say, ‘Patient 46 fits the profile to go in trial A; patient 128 could go in trial B.’ It speeds up the process of recruitment for patients into clinical trials.”
Another benefit of a registry is that it provides information to help identify reasons for differences in treatment outcomes.
“One of the reasons Professor Craddock wanted to set up the MyeCare registry is that, in the old days, AML was one disease,” he said. “Now there are multiple defined subtypes, and the patient population isn’t just one group of patients, it’s a wide group from young patients to middle-aged to elderly patients with multiple morbidities and different ethnic origins, some of whom do much better than others with certain treatments.”
Dr. Walton also agreed with Dr. Mehta about the critical importance of data quality, noting that Dendrite implements a wide range of data validation controls at the point of data entry to ensure integrity.
“You can put limits on fields so that it warns you when you put in an abnormal result,” he said. “It will stop you from inputting a patient with a with an age of 150, and it will stop you from inputting physiologically impossible results from blood tests. Likewise, it’s very careful on date validation, so you can’t have a patient who’s discharged before they’ve been diagnosed.”
The biggest challenge in building a strong registry, according to Dr. Walton, is getting the right balance between having enough data points to give you the answers you want but not so many data points that it becomes hard to collect the data.
“We look forward to supporting this important registry in the long term as longitudinal outcome analyses will help clinicians and their patients make better decisions on which is the right treatment for the right patient to get the best outcome available, taking into account the risks and benefits of different treatment pathways,” he said.
Other UK registries evolve in response to new therapies
The MyeCare AML registry debuted at a time when registry leaders across the UK are working to update and redesign existing national data infrastructure to keep pace with newer cellular therapies.
One such registry targeted for redesign is the British Society of Bone Marrow Transplantation and Cellular Therapy (BSBMT-CT). The BSBMT-CT registry is currently working to transition into a new model that will allow for more detailed and future-ready data collection by capturing therapy-specific information, including data on chimeric antigen receptor T-cell therapies.
Until recently, the BSBMT-CT registry only collected data on bone marrow transplant, explained Sridhar Chaganti, MD, PhD, MRCP, FRCPath, who is involved with the redesign, in an interview.
“The BSBMT-CT had a registry for a number of years that functioned very nicely,” said Dr. Chaganti. “But it has significant limitations as we go forward in terms of having sufficient granularity of the data. We want to develop a registry with much more detail included for specific therapies.”
The redesign is being led by the Data Commission, BSBMT-CT’s internal group responsible for strategy and governance of transplant and cellular therapy registry data, in tandem with partners including the UK-based charity Anthony Nolan and NHS Blood and Transplant.
Dr. Chaganti also expects the effort to secure funding from industry.
“We’ll be looking for pharmaceutical engagement because there is considerable interest from pharma in having access to real-world data, which a registry like this will provide,” he said.
He added that work is still in the brainstorming phase, with expert clinicians and other stakeholders holding meetings to developing the ideas for what should be included in the updated registry.
“It is a work in progress,” Dr. Chaganti said. “It will probably take several months to happen, but that’s the direction of travel at the moment.”
