Congenital Conditions and Rare Diseases Registration and Information Service for Scotland​ (CARDRISS)

Preview of JSON file

{
  "linkage": {
    "associatedMedia": "https://publichealthscotland.scot/population-health/conditions-and-diseases/disease-registration/congenital-conditions-and-rare-diseases-registration-and-information-service-for-scotland-cardriss/overview/"
  },
  "summary": {
    "title": "Congenital Conditions and Rare Diseases Registration and Information Service for Scotland​ (CARDRISS)",
    "abstract": "CARDRISS includes a national register that collects and holds information about babies in Scotland with a major structural and chromosomal condition or recognised syndrome up to their first birthday.",
    "keywords": "Register;,;Congenital;,;Maternity",
    "publisher": {
      "name": "Public Health Scotland",
      "gatewayId": "07"
    },
    "inPipeline": "Available",
    "shortTitle": "Congenital Conditions and Rare Diseases Registration and Information Service for Scotland​ (CARDRISS",
    "datasetType": "Health and disease",
    "description": "Babies with a condition are included if the pregnancy is live born and suspected and/or diagnosed within their first year; a spontaneous still birth at 24 weeks and over; miscarriage at 23 weeks and under or a termination of pregnancy at any gestation.\n\nThe register includes babies from pregnancies ending in January 2021 onwards, where the baby meets this inclusion criteria. The register will be extended in the future to also collect and hold information on other rare diseases.",
    "contactPoint": "phs.edris@phs.scot",
    "datasetSubType": "Not applicable",
    "populationSize": -1
  },
  "coverage": {
    "spatial": "United Kingdom Scotland",
    "typicalAgeRange": "0-1",
    "datasetCompleteness": "https://publichealthscotland.scot/media/31729/2025-02-25_congenitalconditionsinscotland2022_technicalreport.pdf"
  },
  "required": {
    "issued": "2025-05-05T13:57:29.406Z",
    "version": "1.0.0",
    "modified": "2025-05-05T13:57:29.406Z",
    "gatewayId": "1259",
    "revisions": [
      {
        "url": "https://healthdatagateway.org/dataset/1259?version=1.0.0",
        "version": "1.0.0"
      }
    ],
    "gatewayPid": "a277eee0-f418-4e44-9ebc-d40c57354f31"
  },
  "provenance": {
    "origin": {
      "source": "EPR",
      "purpose": "Disease registry",
      "imageContrast": "Not stated"
    },
    "temporal": {
      "timeLag": "More than 6 months",
      "startDate": "2021-01-01T10:43:59Z",
      "accrualPeriodicity": "Annual"
    }
  },
  "accessibility": {
    "usage": {
      "dataUseLimitation": "General research use",
      "dataUseRequirement": "Project-specific restrictions;,;Not for profit use"
    },
    "access": {
      "accessRights": "https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/services-we-offer/",
      "jurisdiction": "UK",
      "accessService": "Scottish National Safe Haven / Trusted Research Environment: https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/national-safe-haven-nsh/",
      "dataProcessor": "Public Health Scotland",
      "dataController": "Public Health Scotland",
      "deliveryLeadTime": "Variable",
      "accessRequestCost": "https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/cost-of-services/",
      "accessServiceCategory": "TRE/SDE"
    },
    "formatAndStandards": {
      "formats": "text/csv",
      "languages": "en",
      "conformsTo": "NHS SCOTLAND DATA DICTIONARY",
      "vocabularyEncodingSchemes": "NHS SCOTLAND NATIONAL CODES"
    }
  },
  "structuralMetadata": [
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "CARDRISS ID",
          "dataType": "Text",
          "sensitive": true,
          "description": "System generated unique identifier per baby."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Outcome of Pregnancy",
          "dataType": "Text",
          "sensitive": false,
          "description": "This states whether the baby was live born, stillborn, late fetal loss or subject to a termination of pregnancy (TOP)."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Pregnancy End Date",
          "dataType": "Date",
          "sensitive": false,
          "description": "The date the pregnancy ended."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Baby CHI",
          "dataType": "Text",
          "sensitive": true,
          "description": "The baby's CHI number."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Baby Sex",
          "dataType": "Text",
          "sensitive": false,
          "description": "The baby's state of being male or female, reflecting biological or assigned sex."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "CARDRISS Baby Date of Death",
          "dataType": "Date",
          "sensitive": false,
          "description": "The baby's date of death as recorded on the CARDRISS registry tool."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother CHI",
          "dataType": "Text",
          "sensitive": true,
          "description": "Mother's CHI number."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother Date of Birth",
          "dataType": "Date",
          "sensitive": true,
          "description": "The mother's date of birth."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother Postcode",
          "dataType": "Text",
          "sensitive": true,
          "description": "The mother's postcode at the pregnancy end date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Out of Scotland Flag",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the mother was a resident outside Scotland at end of pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Out of Scotland Region",
          "dataType": "Text",
          "sensitive": false,
          "description": "The region the mother resided, if the mother is not a Scottish resident at end of pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Father Date of Birth",
          "dataType": "Date",
          "sensitive": true,
          "description": "The father's date of birth."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Expected date of delivery",
          "dataType": "Date",
          "sensitive": false,
          "description": "The expected date of delivery (EDD). This is also referred to as due date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "End of pregnancy care location",
          "dataType": "Text",
          "sensitive": false,
          "description": "Location at which delivery, miscarriage or termination of pregnancy took place."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Birth weight",
          "dataType": "Number",
          "sensitive": false,
          "description": "The first weight recorded for the baby after birth."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Number of babies at end of pregnancy",
          "dataType": "Number",
          "sensitive": false,
          "description": "The number of babies at the end of pregnancy"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Number of babies at end of pregnancy: multiple birth, number not known",
          "dataType": "Text",
          "sensitive": false,
          "description": "Indicates if it is known it is a multiple birth but the number of babies expected is not known."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Number of babies at end of pregnancy: singleton, previously multiple birth",
          "dataType": "Text",
          "sensitive": false,
          "description": "Indicates if it is a singleton birth but previously multiple babies were expected."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Number of babies at end of pregnancy:  not known",
          "dataType": "Text",
          "sensitive": false,
          "description": "Indicates if it is unknown how many babies were expected at end of pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Number of babies affected by congenital condition this pregnancy",
          "dataType": "Number",
          "sensitive": false,
          "description": "The number of babies affected by congenital condition this pregnancy"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Multiple birth type",
          "dataType": "Text",
          "sensitive": false,
          "description": "If it is a multiple birth, then the multiple birth type"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Assisted conception",
          "dataType": "Text",
          "sensitive": true,
          "description": "If any assisted conception methods have been used this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Date fetal death confirmed",
          "dataType": "Date",
          "sensitive": false,
          "description": "This date on which the baby is clinically confirmed to have died in utero."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Date fetal death confirmed Not Applicable",
          "dataType": "Text",
          "sensitive": false,
          "description": "Indicates if recording the date fetal death confirmed is not applicable."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Date fetal death confirmed Not Known",
          "dataType": "Text",
          "sensitive": false,
          "description": "Indicate that the date fetal death confirmed is not known."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Post mortem carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a post-mortem has been carried out on the baby."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Illness before pregnancy",
          "dataType": "Text",
          "sensitive": false,
          "description": "The code to indicate if the mother was ill before the pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Illness during pregnancy",
          "dataType": "Text",
          "sensitive": false,
          "description": "The code to indicate if the mother was ill during the pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Illness category",
          "dataType": "Text",
          "sensitive": false,
          "description": "Code indicating if the mother's illness was before or during the pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Illness ICD10",
          "dataType": "Text",
          "sensitive": false,
          "description": "The diagnosis ICD10 code for the mother's illness."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother-side congenital condition",
          "dataType": "Text",
          "sensitive": false,
          "description": "If there is history of congenital conditions on mother's side."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother-side congenital condition description",
          "dataType": "Text",
          "sensitive": false,
          "description": "Description of mother's family history of congenital conditions."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Father-side congenital condition",
          "dataType": "Text",
          "sensitive": false,
          "description": "If there is history of congenital conditions on father's side."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Father-side congenital condition description",
          "dataType": "Text",
          "sensitive": false,
          "description": "Description of father's family history of congenital conditions."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Sibling congenital condition",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a sibling is affected by a major congenital condition."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Sibling congenital condition description",
          "dataType": "Text",
          "sensitive": false,
          "description": "Description of the congenital condition(s) of sibling"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Diagnosis ICD10",
          "dataType": "Text",
          "sensitive": false,
          "description": "The congenital condition or syndrome ICD10 diagnosis code(s)"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Diagnosis type",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the diagnosis code is a syndrome, a major congenital condition or a minor congenital condition"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Diagnosis ORPHA code",
          "dataType": "Text",
          "sensitive": false,
          "description": "The Orpha code for the recorded diagnosis"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Diagnosis status",
          "dataType": "Text",
          "sensitive": false,
          "description": "Indicates if the diagnosis is confirmed or probable."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Diagnosis additional information",
          "dataType": "Text",
          "sensitive": false,
          "description": "The full text description of the diagnosis"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Diagnosis prenatal diagnosis",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the congenital condition or syndrome was diagnosed or suspected prenatally."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Date baby first suspected of having congenital condition",
          "dataType": "Date",
          "sensitive": false,
          "description": "This is the date the baby was first suspected of having congenital condition."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Date baby first confirmed of having congenital condition",
          "dataType": "Date",
          "sensitive": false,
          "description": "This is the date the baby was first confirmed of having congenital condition."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Period baby first suspected as having congenital condition",
          "dataType": "Text",
          "sensitive": false,
          "description": "This is the period the baby was first suspected as having a congenital condition."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Vital status at discovery",
          "dataType": "Text",
          "sensitive": false,
          "description": "The vital status of the baby when congenital condition was first suspected."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Location baby first suspected of having congenital condition",
          "dataType": "Text",
          "sensitive": false,
          "description": "The location at which the baby was first suspected of having congenital condition."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Location baby first confirmed of having congenital condition",
          "dataType": "Text",
          "sensitive": false,
          "description": "The location at which the baby was first confirmed of having congenital condition."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "First surgical procedure",
          "dataType": "Text",
          "sensitive": false,
          "description": "The first performed or expected surgical procedure for a congenital condition. This can be performed pre-or post-natally."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "First trimester combined trisomy screening carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If first trimester combined trisomy screening was carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Second trimester serum trisomy screening carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If second trimester serum trisomy screening was carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Trisomy 21 chance score based on first line antenatal screening",
          "dataType": "Number",
          "sensitive": false,
          "description": "This is the trisomy 21 score resulting from the first trimester combined or second trimester serum screening"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Trisomy 13/18 chance score based on first line antenatal screening",
          "dataType": "Number",
          "sensitive": false,
          "description": "This is the trisomy 13/18 score resulting from the first trimester combined screening."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mid-pregnancy scan carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the mid-pregnancy scan has been carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "NIPT carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If Non-Invasive Prenatal Testing (NIPT) on maternal blood has been carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Trisomy 21 chance score based on NIPT",
          "dataType": "Text",
          "sensitive": false,
          "description": "The trisomy 21 chance score based on NIPT"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Trisomy 13 chance score based on NIPT",
          "dataType": "Text",
          "sensitive": false,
          "description": "The trisomy 13 chance score based on NIPT"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Trisomy 18 chance score based on NIPT",
          "dataType": "Text",
          "sensitive": false,
          "description": "The trisomy 18 chance score based on NIPT"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Amniocentesis carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If amniocentesis has been carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "CVS carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If chorionic villus sampling (CVS) has been carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a diagnostic genetic test has been carried out on this pregnancy or baby."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test sample type",
          "dataType": "Text",
          "sensitive": false,
          "description": "The clinical sample used for the diagnostic genetic test."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type karyotype",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is karyotype."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type microarray CGH",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is microarray CGH."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type QF-PCR",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is QF-PCR."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type FISH",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is FISH."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type MLPA",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is MLPA."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type selected gene sequencing",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is selected gene sequencing."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type whole exome sequencing",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is whole exome sequencing."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type whole genome sequencing",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is whole genome sequencing."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type other",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is other."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test type not known",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the genetic test type is not known."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test result - pathogenic findings",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the diagnostic genetic testing undertaken indicated a genetic variation that is known or likely to be pathogenic and hence the cause of the baby’s congenital condition/phenotype."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test result - take home message",
          "dataType": "Text",
          "sensitive": false,
          "description": "The take home message of the diagnostic genetic test(s)."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Genetic test result - code",
          "dataType": "Text",
          "sensitive": false,
          "description": "The International System for Human Cytogenetic Nomenclature (ISCN) or Human Genome Variation Society (HGVS) code."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If another diagnostic test has been carried out to confirm congenital condition."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out: fetal echocardiogram",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the other diagnostic test was a fetal echocardiogram."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out: fetal MRI scan",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the other diagnostic test was a fetal MRI scan"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out: postnatal ultrasound",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the other diagnostic test was a postnatal ultrasound"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out: postnatal MRI scan",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the other diagnostic test was a postnatal MRI scan"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out: postnatal CT scan",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the other diagnostic test was a postnatal CT scan"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out: postnatal DMSA scan",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the other diagnostic test was a postnatal DMSA scan"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Other diagnostic test to confirm congenital condition carried out: postnatal biopsy/histology",
          "dataType": "Text",
          "sensitive": false,
          "description": "If the other diagnostic test was a postnatal biopsy/histology"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "First positive prenatal test of congenital condition",
          "dataType": "Text",
          "sensitive": false,
          "description": "First prenatal test, whether screening procedure or diagnostic test, which indicated a possible congenital condition or need for further tests."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Newborn bloodspot test carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a newborn bloodspot test has been carried out."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Congenital condition suspected on newborn bloodspot test carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a congenital condition was suspected on newborn bloodspot test."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Folic Acid Supplementation",
          "dataType": "Text",
          "sensitive": false,
          "description": "If folic acid supplements were taken before or during pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Dose of Folic Acid",
          "dataType": "Text",
          "sensitive": false,
          "description": "The daily dose of folic acid taken before or during pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Antenatal booking ultrasound scan carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If an antenatal booking ultrasound scan was carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Congenital condition suspected on antenatal booking ultrasound scan",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a congenital condition was suspected on the antenatal booking ultrasound scan."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "First trimester nuchal translucency measurement",
          "dataType": "Number",
          "sensitive": false,
          "description": "The nuchal translucency measurement of the baby at first trimester combined trisomy screening scan or antenatal booking scan if in first trimester."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "First trimester nuchal translucency measurement: measurement not obtained",
          "dataType": "Text",
          "sensitive": false,
          "description": "Where the nuchal translucency measurement was not obtained."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "First trimester nuchal translucency measurement: not known",
          "dataType": "Text",
          "sensitive": false,
          "description": "Where the nuchal translucency measurement is not known."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Congenital condition suspected on mid-pregnancy scan",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a congenital condition was suspected on the mid-pregnancy scan"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Congenital condition suspected on other pregnancy scan",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a congenital condition was suspected on any other antenatal scan, not covered elsewhere is CARDRISS dataset."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Newborn physical examination carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a newborn physical examination has been carried out this pregnancy."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Congenital condition suspected on newborn physical examination carried out",
          "dataType": "Text",
          "sensitive": false,
          "description": "If a congenital condition was suspected on the newborn physical examination."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "EUROCAT additional comments",
          "dataType": "Text",
          "sensitive": false,
          "description": "Additional comments not captured by other data items"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Pregnancy End Date Year",
          "dataType": "Date",
          "sensitive": true,
          "description": "The year of pregnancy end date"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Baby UPI",
          "dataType": "Text",
          "sensitive": true,
          "description": "The baby's UPI number. This is the baby's current CHI number."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Baby UPI encrypted",
          "dataType": "Text",
          "sensitive": true,
          "description": "The baby's encrypted UPI number."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "NRS baby date of death",
          "dataType": "Date",
          "sensitive": false,
          "description": "The baby's date of death as recorded by NRS"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother UPI",
          "dataType": "Text",
          "sensitive": true,
          "description": "The mother's UPI number. This is the mother's current CHI number."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother UPI encrypted",
          "dataType": "Text",
          "sensitive": true,
          "description": "The mother's encrypted UPI number."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother Postcode encrypted",
          "dataType": "Text",
          "sensitive": true,
          "description": "The mother's postcode at the pregnancy end date encrypted."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother age at delivery",
          "dataType": "Number",
          "sensitive": false,
          "description": "Age of mother at the pregnancy end date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother date of death",
          "dataType": "Date",
          "sensitive": false,
          "description": "The mother's date of death."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother NHS board at event",
          "dataType": "Text",
          "sensitive": false,
          "description": "The mother's 9-digit NHS Board of Residence code. \nThis will reflect the health board associated with mother's postcode at the pregnancy end date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother NHS board current",
          "dataType": "Text",
          "sensitive": false,
          "description": "The mother's 9-digit NHS Board of Residence code. \nThis will reflect the current health board configuration associated with the mother's postcode at the pregnancy end date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "NHS board congenital condition suspected",
          "dataType": "Text",
          "sensitive": false,
          "description": "The 9-digit health board code where it was first suspected that the baby had a congenital condition. \nThis will reflect the health board configuration at the date the condition was suspected where known else the pregnancy end date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "NHS board congenital condition confirmed",
          "dataType": "Text",
          "sensitive": false,
          "description": "The 9-digit health board code where it was confirmed that the baby had a congenital condition. \nThis will reflect the health board configuration at the event date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "NHS board of delivery at event",
          "dataType": "Text",
          "sensitive": false,
          "description": "The 9-digit code of the health board of delivery.\nThis will reflect the health board configuration for the location at the pregnancy end date."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "NHS board of delivery current",
          "dataType": "Text",
          "sensitive": false,
          "description": "The 9-digit code of the health board of delivery.\nThis will reflect the current health board configuration for the location."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Geography Package",
          "dataType": "Text",
          "sensitive": false,
          "description": "Geographical information held in the Seer platform"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Postcode Deprivation package",
          "dataType": "Text / number",
          "sensitive": false,
          "description": "Deprivation reference information held in the Seer platform"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Seer update date",
          "dataType": "Date Time",
          "sensitive": false,
          "description": "The date time the record was last received."
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother country of birth",
          "dataType": "Text",
          "sensitive": true,
          "description": "Mother's country of birth"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Father country of birth",
          "dataType": "Text",
          "sensitive": true,
          "description": "Father's country of birth"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother occupation",
          "dataType": "Text",
          "sensitive": true,
          "description": "Mother's occupation"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Mother ethnic group",
          "dataType": "Text",
          "sensitive": true,
          "description": "Mother's ethnic group"
        }
      ]
    },
    {
      "name": "CARDISS",
      "columns": [
        {
          "name": "Baby ethnic group",
          "dataType": "Text",
          "sensitive": true,
          "description": "Baby's ethnic group"
        }
      ]
    }
  ],
  "tissuesSampleCollection": [
    {
      "materialType": "None/not available"
    }
  ]
}