Edinburgh Ovarian Cancer Database

Preview of JSON file

{
  "linkage": {
    "associatedMedia": "https://www.wiki.ed.ac.uk/display/CAN/Edinburgh+Cancer+Informatics+Wiki"
  },
  "summary": {
    "title": "Edinburgh Ovarian Cancer Database",
    "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",
      "gatewayId": "6853e904-ed51-448b-b78d-55dee6d1a40f"
    },
    "inPipeline": "Not available",
    "shortTitle": "Edinburgh Ovarian Cancer Database",
    "datasetType": "Health and disease",
    "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.",
    "contactPoint": "cancer.information@nhslothian.scot.nhs.uk",
    "datasetSubType": "Not applicable",
    "populationSize": 4943
  },
  "coverage": {
    "pathway": "Integrated care record, covering the whole patient pathway from diagnosis to death.",
    "spatial": "United Kingdom,Scotland,East Lothian;,;United Kingdom,Scotland,West Lothian;,;United Kingdom,Scotland,Midlothian;,;United Kingdom,Scotland,City of Edinburgh",
    "followUp": "Continuous",
    "typicalAgeRange": "0-150"
  },
  "required": {
    "issued": "2024-10-08T11:32:02.983753Z",
    "version": "2.0.0",
    "modified": "2024-10-08T11:32:02.983763Z",
    "gatewayId": "805",
    "revisions": [
      {
        "url": "https://web.prod.hdruk.cloud//dataset/805?version=1.0.0",
        "version": "1.0.0"
      }
    ],
    "gatewayPid": "38c96e06-2918-4333-ac7d-afbcbd215021"
  },
  "provenance": {
    "origin": {
      "imageContrast": "Not stated",
      "collectionSituation": "Clinic;,;Primary care - Clinic;,;Secondary care - Outpatients;,;Secondary care - In-patients;,;Services;,;Prescribing - Community pharmacy"
    },
    "temporal": {
      "timeLag": "Variable",
      "startDate": "1975-01-01",
      "accrualPeriodicity": "Continuous"
    }
  },
  "observations": [
    {
      "observedNode": "Persons",
      "measuredValue": 4943,
      "observationDate": "2022-08-24",
      "measuredProperty": "Count",
      "disambiguatingDescription": "Ovarian cancer patients from the Lothian region of Scotland."
    }
  ],
  "accessibility": {
    "usage": {
      "resourceCreator": {
        "name": "NHS Lothian and the University of Edinburgh"
      },
      "dataUseLimitation": "Project-specific restrictions;,;Research-specific restrictions",
      "dataUseRequirement": "Project-specific restrictions;,;Disclosure control"
    },
    "access": {
      "accessRights": "https://www.wiki.ed.ac.uk/display/CAN/Governance",
      "jurisdiction": "GB-SCT;,;GB-GBN",
      "accessService": "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.",
      "dataProcessor": "NHS Lothian and the University of Edinburgh",
      "dataController": "NHS Lothian",
      "deliveryLeadTime": "Not applicable",
      "accessRequestCost": "Available on request",
      "accessServiceCategory": "Direct access"
    },
    "formatAndStandards": {
      "formats": "application/sql;,;text/csv",
      "languages": "en",
      "vocabularyEncodingSchemes": "LOCAL"
    }
  }
}