MyeCare UK AML Registry
Research type
Research Database
IRAS ID
349891
Contact name
Paul Robinson
Contact email
Research summary
A prospective, real-world registry of acute myeloid leukaemia patients in the United Kingdom
REC name
North West - Haydock Research Ethics Committee
REC reference
25/NW/0045
Date of REC Opinion
16 Apr 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The MyeCare Registry is a prospective, multi-centre, observational Registry of acute myeloid leukaemia (AML) patients, at diagnosis.
Patients are eligible for inclusion if they have newly diagnosed AML, acute promyelocytic leukaemia (APL), mixed-phenotype acute leukaemia (MPAL) or blastic plasmacytoid dendritic cell neoplasm (BPDCN), are capable of giving informed consent, and are 16 or greater years of age.
Only patients who provide written informed consent to their data being collected in a prospective manner will be entered onto the Registry.
Routine clinical information, including demographic, diagnostic, genomic, treatment, transplant, outcome and follow-up data will be inputted by sites into a central Registry database, hosted by Dendrite Clinical Systems Ltd. Data entry will be in real-time.
If available, and with participants’ consent, MyeCare will integrate prospective clinical outcome data with the results of whole genome sequencing (WGS), in collaboration with Genomic England Limited (GEL).
In addition, should participants consent to the Quality of Life (QoL)/patient-related outcome measures (PROMS) component of the Registry, QoL and PROMS data will be collected directly from participants.
This is an ongoing registry, with no foreseen end date. Individual participants will be followed up annually, for up to 5 years from diagnosis.
Research programme
AML is a common blood cancer and affects about 3000 adults in the UK every year. Despite advances in treatment, outcomes are poor in a significant proportion of patients. The MyeCare Registry will collect data from adult AML patients in the UK on factors that influence the outcome of their treatment and quality of life with the aim of improving these for future patients. Data will be collected on ethnicity, fitness, geographic and socio-economic factors influencing outcomes of treatment, and the tolerability, safety and efficacy of different treatments. The MyeCare Registry will also study variation in access to tests and treatments across the UK and establish equity; and observe any gaps and optimise patient referral pathways for stem cell transplant procedure to ensure appropriate access. This information will allow haematologists and the AML community to: • Standardise treatments across regions/hospitals and improve the quality of patients’ care • Work with NHS England (NHSE) to identify gaps and ensure the optimum allocation of resources • Compare real world outcomes to that from clinical trials • Provide data and samples for researchers to explore the science and genetics (including WGS) of AML to reduce treatment failures • Work with pharmaceutical partners developing new drugs and treatments.
Research database title
A prospective, real-world registry of acute myeloid leukaemia patients in the United Kingdom
Establishment organisation
DIDACT Foundation
Establishment organisation address
48 Chancery Lane
London
WC2A 1JF