Specialist Dataset

Risk and outcomes of coagulopathies in acutely unwell adults

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Coagulopathies and bleeding disorders can reflect hereditary conditions such as Haemophilia or von Willebrand disease, be associated with other diseases such as liver conditions, sepsis, trauma or be iatrogenic, related to therapies or their side effects.   Hospital associated venous thromboembolic (VTE) events remain common despite well known risk factors and effective prophylactic treatments.  There are a number of blood biomarkers associated with coagulopathies, as well as genetic tests and treatments.  This dataset focuses on the acute presentation of coagulopathies, including in people with known bleeding/clotting disorders and in people for present with a new clotting or bleeding events during an acute presentation.

PIONEER geography

The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic & socio-economic mix.  University Hospitals Birmingham NHS Foundation Trust is a Comprehensive Care Haemophilia Centre (CCC) and cares for a wide range of inherited bleeding disorders, including Haemophilia A and B, von Willebrand Disorder and other clotting factor and platelet disorders.  UHB also has a mandated VTE risk and prescription prompt in the medical clerking, capturing risk factors and contraindications for anticoagulation.

EHR

UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2,750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal 'My Health'.

Scope

All patients admitted with coagulopathy or bleeding disorders (chronic or acute) from 2000 onwards.  The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 and SNOMED-CT codes.  Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, diagnosis of TE or bleeds, clotting parameters, D-Dimers, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed and administered treatments (fluids, blood products, procedures), all outcomes.

Available supplementary data

Matched controls; ambulance, synthetic data.

Available supplementary support

Analytics, model build, validation and refinement; AI; data partner support for ETL (extract, transform and load) process, clinical expertise, patient and end-user access, purchaser access, regulatory requirements, data-driven trials, 'fast screen' services.

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