UHB 100K Genomics patient clinical data including their acute care contacts

Longitudinal, routine data for University Hospitals Birmingham NHSFT patients recruited to the 100K Genomes project that accessed Acute Care at UHB. Rare cancers & diseases, adult & children. Serial & granular. Investigations, therapies, outcomes. 1 in 17 people are born with or develop a rare disease during their lifetime. 80% of rare diseases have an identified genetic component. However, there are usually significant diagnostic delays. The 100k genome project was established to collect clinical data, genomic sequencing & samples from people with rare diseases, to better understand disease & find novel treatments & interventions. This includes rare cardiovascular, ciliopathy, endocrine, gastroenterological, haematological, metabolic, neurological, renal, respiratory skeletal & rheumatological disorders & cancers. See https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/information-for-gmc-staff/rare-disease-documents/rare-disease-eligibility-criteria/ The PIONEER University Hospital Birmingham (UHB) secondary care 100k genomics dataset contains granular demographic, morbidity, treatment & outcome data, supplemented with acute care contacts with serial physiology, blood biomarker data from UHB patients recruited to this programme, to better understand the acute healthcare needs of this group of patients. PIONEER geography The West Midlands has a population of 5.9m & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups & a higher than average proportion of patients with rare diseases. Birmingham is home to the first Centre for Rare Diseases for adults & children, treating more than 500 rare diseases & 9000 patients per year. EHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2m patient episodes per year, 2750 beds & 100 ITU beds. 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”. Scope: All patients recruited to the 100K genome project from UHB. This includes all routinely collected health data for all these patients, but data is uniquely supplemented with all acute care contacts through UHB. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes. Available supplementary data: Matched controls; ambulance, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.

Webpage:
https://www.healthdatagateway.org/dataset/fed0d62b-f7f7-475c-89c9-67caa374f970

Licence:
Name: HDR UK Innovation Gateway Access
URL: https://www.hdruk.ac.uk/infrastructure/gateway/terms-and-conditions/

Tags:

genomics west midlands pioneer birmingham rare cancers rare diseases cardiovascular endocrine renal neurological metabolic opthalmology respiratory rheumatology skeletal gynaecological cancers fallopian endometrial ovarian primary peritoneal lung cancer prostate cancer colorectal cancer breast cancer sarcoma paediatric sarcoma renal cancer adult brain tumour bladder cancer melanoma upper gastrointestinal (gi) tumours hepatopancreatobiliary tumours testicular cancer head and neck cancers cancer of unknown primary childhood solid tumours neuroendocrine tumours (except benign) haematological malignancies thyroid cancers

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