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Edinburgh Ovarian Cancer Database

Population Size

4,943

People

Population Size statistic card

Years

1975

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Scotland

...see more

Geographic coverage statistic card

Lead time

2-4 weeks

Lead time statistic card

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

Associated media

https://www.wiki.ed.ac.uk/display/CAN/Edinburgh+Cancer+Informatics+Wiki

Keywords

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

https://www.wiki.ed.ac.uk/display/CAN/Governance

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

Dataset Types: Health and disease

Collection Sources: Clinic, Primary care - Clinic, Secondary care - Outpatients, Secondary care - In-patients, Services, Prescribing - Community pharmacy

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