DataLoch Respiratory

Preview of JSON file

{
  "linkage": {
    "associatedMedia": "https://www.wiki.ed.ac.uk/display/DMCatalogue/2023.2%3A+DataLoch_Respiratory"
  },
  "summary": {
    "title": "DataLoch Respiratory",
    "abstract": "A database of South-East Scotland residents diagnosed with Asthma, Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease, Cystic Fibrosis or Wheeze containing research-ready data on demographics, diagnoses, events, measurements and medications.",
    "keywords": "BREATHE;,;COPD;,;LUNG DISEASE;,;ILD;,;ASTHMA;,;CYSTIC FIBROSIS;,;Wheeze",
    "publisher": {
      "name": "DataLoch",
      "gatewayId": "6853e904-ed51-448b-b78d-55dee6d1a40f"
    },
    "inPipeline": "Not available",
    "shortTitle": "DataLoch Respiratory",
    "datasetType": "Health and disease",
    "description": "DataLoch has collaborated with the BREATHE Health Data Research Hub and others at Health Data Research UK (HDRUK) to create a respiratory-related database of South-East Scotland residents (NHS Lothian) with chronic respiratory conditions, specifically Asthma, Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD). DataLoch's respiratory registry is one of three related registries alongside others in England (Clinical Practice Research Datalink (CPRD) Aurum) and Wales (Secure Anonymised Information Linkage Databank (SAIL)). In addition to these conditions, the DataLoch respiratory registry includes Cystic Fibrosis (CF) and Wheeze (a common respiratory symptom).\n\nThis database of respiratory patients also contains research-ready data related to these patients' demographics, diagnoses, condition events, measurements and medications, expertly curated with clinical input and as much harmonisation as possible across the different UK registries using methodology in a soon-to-be-published paper. The data is presented in tables where each dataset has had its data chosen and derived from multiple sources and ran against algorithms to remove the noise from the raw data.",
    "contactPoint": "dataloch@ed.ac.uk",
    "datasetSubType": "Not applicable",
    "populationSize": 177700
  },
  "coverage": {
    "pathway": "Primary and secondary care.",
    "spatial": "United Kingdom;,;United Kingdom,Scotland;,;United Kingdom,Scotland,City of Edinburgh;,;United Kingdom,Scotland,Midlothian;,;United Kingdom,Scotland,East Lothian;,;United Kingdom,Scotland,West Lothian",
    "followUp": "> 10 Years",
    "typicalAgeRange": "0-150"
  },
  "required": {
    "issued": "2024-10-08T11:32:04.34501Z",
    "version": "2.0.0",
    "modified": "2024-10-08T11:32:04.345019Z",
    "gatewayId": "813",
    "revisions": [
      {
        "url": "https://web.prod.hdruk.cloud//dataset/813?version=1.0.0",
        "version": "1.0.0"
      }
    ],
    "gatewayPid": "355ac17a-113e-4fa0-82b3-2e5ce8c09a9e"
  },
  "provenance": {
    "origin": {
      "source": "EPR",
      "purpose": "Disease registry",
      "imageContrast": "Not stated",
      "collectionSituation": "Primary care - Clinic;,;Secondary care - In-patients;,;Secondary care - Outpatients"
    },
    "temporal": {
      "timeLag": "Not applicable",
      "startDate": "2004-01-01",
      "accrualPeriodicity": "Other"
    }
  },
  "observations": [
    {
      "observedNode": "Persons",
      "measuredValue": 177700,
      "observationDate": "2023-05-18",
      "measuredProperty": "Count",
      "disambiguatingDescription": "Patients with Asthma in DataLoch Respiratory"
    },
    {
      "observedNode": "Persons",
      "measuredValue": 400,
      "observationDate": "2023-05-18",
      "measuredProperty": "Count",
      "disambiguatingDescription": "Patients with Cystic Fibrosis in DataLoch Respiratory"
    },
    {
      "observedNode": "Persons",
      "measuredValue": 39500,
      "observationDate": "2023-05-18",
      "measuredProperty": "Count",
      "disambiguatingDescription": "Patients with Wheeze in DataLoch Respiratory"
    },
    {
      "observedNode": "Persons",
      "measuredValue": 55200,
      "observationDate": "2023-05-18",
      "measuredProperty": "Count",
      "disambiguatingDescription": "Patients with COPD in DataLoch Respiratory"
    },
    {
      "observedNode": "Persons",
      "measuredValue": 23700,
      "observationDate": "2023-05-18",
      "measuredProperty": "Count",
      "disambiguatingDescription": "Patients with ILD in DataLoch Respiratory"
    }
  ],
  "accessibility": {
    "usage": {
      "resourceCreator": {
        "name": "DataLoch"
      },
      "dataUseLimitation": "Project-specific restrictions",
      "dataUseRequirement": "Ethics approval required;,;Disclosure control;,;Project-specific restrictions"
    },
    "access": {
      "accessRights": "https://www.wiki.ed.ac.uk/display/DMCatalogue/2023.2%3A+DataLoch_Respiratory;,;https://dataloch.org/data/how-to-apply",
      "jurisdiction": "GB-SCT;,;GB-GBN",
      "dataProcessor": "University of Edinburgh",
      "dataController": "NHS Lothian",
      "deliveryLeadTime": "Variable",
      "accessRequestCost": "https://dataloch.org/data/how-to-apply"
    },
    "formatAndStandards": {
      "formats": "text/tsv",
      "languages": "en",
      "vocabularyEncodingSchemes": "READ;,;ICD10;,;ATC;,;OTHER"
    }
  }
}