MyeCare Registry to improve standards of care and outcomes for Acute Myeloid Leukaemia (AML) patients

A collaboration between haematology specialists, Accelerating Clinical Trials Ltd (ACT) and Dendrite Clinical Systems, has resulted in the roll-out of the ‘MyeCare’ UK Acute Myeloid Leukaemia (AML) Registry. The MyeCare Registry is the first prospective adult AML registry in the UK to provide an infrastructure for research and improve care in AML patients by ensuring standardisation and equity of access to treatments and transplants.

“Acute Myeloid Leukaemia (AML) is the most common acute leukaemia in adults and affects approximately thirty out of 100,000 people in the UK, about 3000 to 3500 patients a year. The identification of new and effective treatments in AML remains a major area of unmet need,” explained Professor Charles Craddock, Professor of Haemato-oncology at the University of Warwick, Academic Director of the Centre for Clinical Haematology at University Hospitals Birmingham and Chair of the UK Acute Myeloid Leukaemia Research Network. “There are several treatments for AML including intensive chemotherapy and allogeneic stem cell transplant in adults who are able to tolerate them.  More recently, many novel non-chemotherapy drugs have demonstrated that we can get a lot of older, less fit adults into remission, but the disease eventually returns in the great majority of patients. So, at a time of increasing numbers of treatment options for adults with AML, there is a need to complement the data from clinical trials with registry data to understand how the range of treatments and stem cell transplants perform in the ‘real world’, how they are being applied and who has access to them. This prospective registry, MyeCare, will improve care in AML patients by collecting such data to ensure that best practices are standardised and that there is equity of access to treatments and transplants.”

The registry has been designed to systematically collect demographic, clinical, socio-economic, quality of life, genomic, treatment and outcomes data of adult patients with AML from the time they are diagnosed and through their treatment pathway. More specifically, the registry will:

•             Look at the outcomes of patients in the real world

•             Determine the proportion of patients who would be likely to benefit from a transplant are offered the opportunity and how many undergo the procedure

•             Determine if there is any inequity of access to either intensive chemotherapy, stem cell transplant and novel drugs across the UK.

•             Understand more about the tolerability of new and developing therapies in terms of toxicity.

•             Correlate biological aspects of AML, which can be characterised at a very precise level, using whole genome sequencing.

“Because AML is such a challenging disease, we are managing to cure less than 50% of the patients, and we are constantly striving to see how we can improve our treatments and thereby the outcomes for our patients. Ensuring standardisation and aiming for equity is a fundamental aim of MyeCare,” said Dr Priyanka Mehta, a Consultant Haematologist at the University Hospitals Bristol NHS Foundation Trust and Chief Investigator in the registry. “By constructing a prospective real world dataset, we aim to create a robust infrastructure for future research in AML and importantly bring together the community of healthcare professionals involved in the treatment of AML patients to implement best evidence/ guidelines whilst contributing to research. As a prospective database complete with data on clinical, diagnostic and patient reported outcomes, we hope to learn the patterns of disease outcomes in the real world – including factors like socio economic, geographic and ethnic – which may not be available in clinical trials. This real world data would add to the evidence generated in clinical trials and potentially a source of ‘standard of care’ data allowing ‘single arm trials’ making trials more efficient. MyeCare has hence been designed to meet the ‘real world data’ requirements by approval/ regulatory bodies like NICE.  These data could also prove very useful in the longer term follow up on the performance of newly approved therapies in AML.”

The Registry was launched in the summer of 2025 and has already recruited approximately 120 patients from 15 registered centres. It is hoped that by the end of 2026 the number of centres participating the registry will double and eventually, the registry hopes to recruit about 500 patients per year.

“We have designed the Registry to collect data in a similar way to clinical trials. This means the Registry is approved by an Ethics committee, patients are consented and data is anonymised and sites are trained for all the processes” Dr Priyanka Mehta added. “In principle, we want the Registry to be inclusive and representative of the UK population in urban and rural areas and we hope to open it in as many centres that are willing in due course.”

Due to the complex nature of the registry, the working group have worked closely with ACT, who helped provide a sustainable infrastructure for conducting and accelerating such a specialised haemato-oncology registry.

“We have worked closely with Dendrite Clinical Systems to set up the platform so that we have everything in place to collect the data that have been agreed by the registry’s working group. We have operationalised the way the data are collected and how we can best use those data for the benefit of AML patients, clinicians, blood cancer charities and pharmaceutical companies,” said Dr Paul Sherrington, Chief Executive Officer of ACT. “I think this is the first time that any registry, certainly in blood cancers, is collecting whole genome sequencing data. It is essential that we capitalise on the UK’s rich diversity by ensuring that all sites make every effort to consent all newly diagnosed AML patients, regardless of ethnicity, socioeconomic status, geographic location, or other demographic characteristics. A representative cohort is critical to ensuring that our findings reflect the full spectrum of patients affected by AML and to understanding whether outcomes and experiences differ across diverse populations.”

In conjunction with ACT, the data system in MyeCare was developed by Dendrite Clinical Systems, a company with a track record as a specialist provider of clinical registries.  The registry, utilising Dendrite’s Intellect-Web Registry software, enables users (clinicians, hospitals, societies and associations, healthcare companies etc) to collect, analyse, track and report procedural, treatment and outcomes data for clinical audit and benchmarking, research, clinical trials and Real World Evidence studies. The system’s unique ‘Visual Dashboard’ facilitates real-time data analysis reflecting the required analysis/reporting needs, and the innovative e-PROMS module, allowing contacts to receive and answer questionnaires remotely.

“The rollout of MyeCare Registry is a testament to the drive and dedication of UK haematologists who have come together to develop a complex registry in terms of its capacity to track multiple treatments, whilst simultaneously collecting and recording both procedural, outcomes, genomic and PROMs data,” said Dr Peter Walton, Managing Director of Dendrite Clinical Systems. “This registry will provide much needed data to improve diagnosis, lead to the development of new treatments and patient pathways, and improve outcomes for AML patients.”

“It’s very important that this initiative succeeds and we’re delighted to be partnering with Dendrite, because it is increasingly recognised that the data you generate from randomised clinical trials – whilst very important in terms of informing treatment options –aren’t designed to address really important clinical questions that can be addressed through a registry,” said Professor Craddock. “So prospective registries are increasingly seen as a way of providing really important insights into critical questions into how we improve the outcomes of people with AML.”

MyeCare is funded by educational grants from charities such as the Anthony Nolan, Cure Leukaemia and Leukaemia UK, and global pharmaceutical companies.

More information

For more information about MyeCare, the adult AML registry, and the UK AML Research Network, please visit:https://www.ukamlrn.co.uk/