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Edinburgh Ovarian Cancer Database
Population Size
4,943
People
Years
1975
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Scotland
...see more
Lead time
2-4 weeks
Summary
Established in 2019, the Ovarian Cancer Database builds on 40 years of data collection across the region of the South East Scotland Cancer Network. The database holds data on diagnosis, treatment and outcomes of patients undergoing care within the region.
Documentation
The Edinburgh Ovarian Cancer Database was founded by Professor John Smyth in 1984 with the main aim of tracking the disease course of every ovarian cancer patient in the South-East of Scotland (Lothian, Fife, Borders and Dumfries and Galloway). Clinical, pathological, genetic, surgical and treatment information is recorded. The database tracks the patient’s disease course including therapies, responses to treatment, progression episodes, radiological investigations, tumour marker results and ultimately cause of death. It has been and continues to be a huge resource for retrospective research, sample collection and uniform prospective data collection. The data helps identify patients suitable for particular therapy options and clinical trials. There are over 4500 patients documented to date. Data is curated by a team of 2 data managers who source data from patient case notes, electronic patient records, SCI-Store, APEX, the Scottish morbidity registers and from Scotland’s genetic services. Going forward some areas of the database will be populated using automated feeds from various national, regional and bespoke databases and EPRs.
Dataset type
Health and disease
Dataset sub-type
Not applicable
Dataset population size
4943
Keywords
Genetic testing, BRCA1/BRCA2/HRD, CA125, PARP inhibitor, mAb, Platinum resistance, Chemotherapy/SACT, Radiology, Hormone Therapy, Progression/Recurrence/Survival
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | Ovarian cancer patients from the Lothian region of Scotland. | 4943 | Count | 24 Aug 2022 |
Provenance
Collection source setting
Clinic, Primary care - Clinic, Secondary care - Outpatients, Secondary care - In-patients, Services, Prescribing - Community pharmacy
Patient pathway description
Integrated care record, covering the whole patient pathway from diagnosis to death.
Image contrast
Not stated
Biological sample availability
None/not available
Details
Publishing frequency
Continuous
Version
2.0.0
Modified
08/10/2024
Citation Requirements
NHS Lothian and the University of Edinburgh
Coverage
Start date
01/01/1975
Time lag
Variable
Geographic coverage
United Kingdom, Scotland, East Lothian, West Lothian, Midlothian, City of Edinburgh
Maximum age range
150
Follow-up
Continuous
Accessibility
Language
en
Controlled vocabulary
LOCAL
Format
application/sql, text/csv
Data Access Request
Dataset pipeline status
Not available
Access rights
Time to dataset access
2-4 weeks
Access request cost
Available on request
Access method category
Direct access
Access service description
Researchers define their cohort and time period and select from a list of available data variables. Analysts will retrieve the data and make it available as an Excel file.
Jurisdiction
GB-SCT, GB-GBN
Data use limitation
Project-specific restrictions,Research-specific restrictions
Data use requirements
Project-specific restrictions,Disclosure control
Data Controller
NHS Lothian
Data Processor
NHS Lothian and the University of Edinburgh