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Edinburgh Ovarian Cancer Database

Summary

Abstract

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.

Keywords

Genetic testing BRCA1/BRCA2/HRD CA125 PARP inhibitor mAb Platinum resistance Chemotherapy/SACT Radiology Hormone Therapy Progression/Recurrence/Survival

Publisher

  • Name
    DataLoch
  • Logo

    Not available

  • Description
    Not available
  • Contact point
    Not available

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

  • Spatial coverage

    United Kingdom, Scotland, East Lothian, United Kingdom, Scotland, West Lothian, United Kingdom, Scotland, Midlothian, United Kingdom, Scotland, City of Edinburgh

  • Geographic levels
    Not available

Temporal

  • Start date
    01/01/1975
  • End date
    Not available
  • Frequency
    Continuous
  • Distribution release date
    Not available

Provenance

  • Purpose
    Not available
  • Source
    Not available
  • Collection situation
    Clinic, Primary care - Clinic, Secondary care - Outpatients, Secondary care - In-patients, Services, Prescribing - Community pharmacy

Access and governance

  • Conditions of access
    Project-specific restrictions, Research-specific restrictions

Requesting access to this data

This is a secure dataset that can only be accessed by researchers from approved organisations.

Find out how to apply to access this dataset

Usage

  • Conditions of use
    Project-specific restrictions, Disclosure control
  • Resource creator
    NHS Lothian and the University of Edinburgh
  • Is referenced by
    Not available

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.
  • Jurisdiction
    GB-SCT, GB-GBN
  • Data controller
    NHS Lothian
  • Data processor
    NHS Lothian and the University of Edinburgh

Format and standards

  • Language
    English
  • Format
    Application/sql, text/csv

Enrichment and linkage

  • Related datasets
    • Not available
  • Linkage opportunity
    Not available
  • Tools
    • Not available

Synthetic data

Synthetic data is not yet available for this dataset. 

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