Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 228 days ago
Documentation
Description:
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.
Coverage
Spatial:
United Kingdom,Scotland,East Lothian; United Kingdom,Scotland,West Lothian;
United Kingdom,Scotland,Midlothian; United Kingdom,Scotland,City of Edinburgh
Typical Age Range:
0-150
Follow Up:
Continuous
Pathway:
Integrated care record, covering the whole patient pathway from diagnosis to
death.
Provenance
Origin
Collection Situations:
- Clinic
- Primary care - Clinic
- Secondary care - Outpatients
- Secondary care - In-patients
- Services
- Prescribing - Community pharmacy
Temporal
Accrual Periodicity:
Continuous
Start Date:
01 January 1975
Time Lag:
Variable
Accessibility
Access
Access Rights:
Access Service:
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.
Access Request Cost:
Available on request
Delivery Lead Time:
Not applicable
Jurisdictions:
- GB-SCT
- GB-GBN
Data Controller:
NHS Lothian
Data Processor:
NHS Lothian and the University of Edinburgh
Usage
Data Use Limitations:
- Project-specific restrictions
- Research-specific restrictions
Data Use Requirements:
- Project-specific restrictions
- Disclosure control
Resource Creators:
NHS Lothian and the University of Edinburgh
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Languages:
en
Formats:
- application/sql
- text/csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Ovarian cancer patients from the Lothian region of Scotland.
4943
Count
24 August 2022