Background:

A PIONEER synthetic dataset of 20,000 ethnically diverse hypertrophic cardiomyopathy patients created using CT-GAN generative AI. Data includes clinical & biological phenotyping, co-morbidities, investigations (ECG, ECHO), procedures & outcomes.

Well-created synthetic data establishes a governance risk-free environment for algorithm development & experimentation. This includes evaluating new treatment models, care management systems, clinical decision support, and more. Synthetic data is of particular use in rare diseases, where real data may be in short supply, or to replicate disease in less common patient demographics (e.g. ethnicities).

Familial hypertrophic cardiomyopathy (HCM) is a rare genetic condition characterised by thickening (hypertrophy) of the cardiac muscle, usually of the interventricular septum. Arrhythmias can be life threatening and HCM is associated with an increased risk of sudden death. Some affected individuals develop potentially fatal heart failure, which may require heart transplantation. Approximately 130,000 people have HCM in the UK, but there is a significant burden of undiagnosed disease and diagnostic delay.

Geography: The West Midlands (WM) has a population of 6 million & includes a diverse ethnic & socio-economic mix. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & > 120 ITU bed capacity. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.

Data set availability: Data access is available via the PIONEER Hub for projects which will benefit the public or patients. This can be by developing a new understanding of disease, by providing insights into how to improve care, or by developing new models, tools, treatments, or care processes. Data access can be provided to NHS, academic, commercial, policy and third sector organisations. Applications from SMEs are welcome. There is a single data access process, with public oversight provided by our public review committee, the Data Trust Committee. Contact pioneer@uhb.nhs.uk or visit www.pioneerdatahub.co.uk for more details.

Available supplementary data: Matched controls; ambulance and community data. Unstructured data (images). We can provide the dataset in OMOP and other common data models and can provide real world data to meet bespoke requirements.

Available supplementary support: Analytics, model build, validation & refinement; A.I. support. Data partner support for ETL (extract, transform & load) processes. Bespoke and “off the shelf” Trusted Research Environment (TRE) build and run. Consultancy with clinical, patient & end-user and purchaser access/ support. Support for regulatory requirements. Cohort discovery. Data-driven trials and “fast screen” services to assess population size.