Version 3.0.0

identifier

System dataset identifier.

title	guidance	is_list	required	type
Dataset identifier	N/A	False	True	["Uuidv4[{'maxLength': 36, 'minLength': 36, 'pattern': '^[a-fA-F0-9]{8}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{12}$', 'type': 'string'}]", "Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

226fb3f1-4471-400a-8c39-2b66d46a39b6
https://web.www.healthdatagateway.org/dataset/226fb3f1-4471-400a-8c39-2b66d46a39b6

version

Dataset metadata version.

title	guidance	is_list	required	type
Dataset Version	Dataset metadata version should follow standard SEMVER naming conventions (https://semver.org). For example: 1.1.0 major.minor.patch. Major: Significant/breaking changes. Minor: New features and bug fixes. Patch: Minor fixes without new features.	False	True	["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"]

Examples:

1.1.0

revisions

A list of persistent identifiers and version numbers for previous versions of metadata for this dataset

version

Version number used for previous version of this dataset

title	guidance	is_list	required	type
revision version		False	True	["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"]

Examples:

6.0.0

url

Some url with a reference to the record of a previous version of this dataset

title	guidance	is_list	required	type
revision url		False	False	["UrlV2[{'anyOf': [{'pattern': '^\\s((https?:\\/\\/)([a-zA-Z0-9-]+\\.?)+[a-zA-Z]{2,}(:\\d+)?(\\/[^\\s]*)?(\ )?)+$', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

https://api.service.nhs.uk/health-research-data-catalogue/datasetrevisions/841f7da2-b018-41f6-b4ae-2e0aadab6561

issued

Datetime stamp of when this metadata version was initially issued

title	guidance	is_list	required	type
Metadata Issued Datetime		False	True	['datetime']

Examples:

2024-10-24T00:00:00.000Z

modified

Datetime stamp of when this metadata was last modified

title	guidance	is_list	required	type
Last Modified Datetime		False	True	['datetime']

Examples:

2024-10-24T00:00:00.000Z

summary

Summary of metadata describing key pieces of information.

title

Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.

title	guidance	is_list	required	type
Title	- The title should provide a short description of the dataset and be unique across the gateway. - If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. - If an accronym is widely used the dataset name, please add it in brackets () at the end of the title. - Good titles should summarise the content of the dataset and if relevant, the region the dataset covers. - Example: North West London COVID-19 Patient Level Situation Report	False	True	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"]

Examples:

North West London COVID-19 Patient Level Situation Report
Scottish Morbidity Record (SMR)

abstract

Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible.

title	guidance	is_list	required	type
Dataset abstract	- The abstract should provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. - The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. - Effective abstracts should avoid long sentences and abbreviations where possible. - Note: Researchers will view Titles and the first line of Abstracts (list view) when searching for datasets and choosing whether to explore their content further. - Abstracts should be different from the full description for a dataset. - Example: CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice.	False	True	["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]"]

Examples:

CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice.

dataCustodian

This is the organisation responsible for running or supporting the data access request process, as well as enquiries about a dataset. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.

identifier

Please provide a Research Organization Registry (ROR) identifier (see https://ror.org/) for your organisation.

title	guidance	is_list	required	type
identifier	Example: https://ror.org/053fq8t95 If your organisation does not have a ROR identifier please use the “suggest and institute” function here: https://docs.google.com/forms/d/e/1FAIpQLSdJYaMTCwS7muuTa-B_CnAtCSkKzt19lkirAKG4u7umH9Nosg/viewform	False	True	['str', 'int']

Examples:

30f16703-28bc-4f45-9ce5-625d2d3db27d

name

The organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata.

title	guidance	is_list	required	type
Name of data provider	In most this will be the same as the Team you have on the Gateway. However, in some cases this will be different. For example, Tissue Directory are a Team on the Gateway but coordinate activities across a number of Data Providers such as Cambridge Blood and Stem Cell Biobank.	False	True	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"]

Examples:

Health Data Research UK

logo

Please provide a logo associated with the Gateway Organisation using a valid URL. The following formats will be accepted .jpg, .png or .svg. If a logo is not submitted this will default to the logo for the team submitting the metadata.

title	guidance	is_list	required	type
Organisation Logo		False	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null']

description

Please provide a URL that describes the organisation. If a description is not provided this will default to the description of the team submitting the metadata.

title	guidance	is_list	required	type
Organisation Description		False	False	["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

contactPoint

Organisation contact point(s) which will be used for receiving queries from HDR, and enquiries and data access requests from Researchers. If a contact point is not provided this will default to the contact point for the team submitting the metadata.

title	guidance	is_list	required	type
contact point		False	True	["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'List']

Examples:

test@test.co.uk

memberOf

Please indicate if the organisation is an Alliance Member or a Hub. If this field is not submitted this will default to the membership for the team submitting the metadata.

title	guidance	is_list	required	type
Organisation Membership		False	False	["MemberOfV2['Hub','Alliance','Other','NCS']", 'null']

populationSize

Input the number of people captured within the dataset.

title	guidance	is_list	required	type
Dataset population size	This number informs a filter for Researchers to differentiate dataset search results based on the number of people in the dataset, and does not pull from the Observations fields. The filter also allows for Researchers to search datasets which have no population size reported, but will not pull any population size captured in the Observations section.	False	True	['int']

Examples:

1000

keywords

Please provide a list of relevant and specific keywords that can improve the search engine optimisation (SEO) of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.

title	guidance	is_list	required	type
Keywords	- Please provide relevant and specific keywords that can improve the search engine optimization of your dataset. - Please enter one keyword at a time and click Add New Field to add further keywords. - Text from the title is automatically included in the search, there is no need to include this in the keywords. - Include words that researcher may include in their searches.	True	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"]

Examples:

Outpatient Care
Socioeconomic Deprivation
Infant Morbidity
Learning disability
Primary Care Prescription
Accident and Emergency Admissions

doiName

DOI associated to this dataset. Find out more about DOIs here: https://www.doi.org/the-identifier/what-is-a-doi/

title	guidance	is_list	required	type
Digital Object Identifier (DOI) for dataset	- Please note: This is not the DOI of the publication(s) associated with the dataset. - All HDR UK registered datasets should either have a (DOI) or be working towards obtaining one. - If a DOI is available, please provide the DOI. - What happens if I do not have a DOI?: Contact your academic organisation to find out if there is an existing relationship with a DOI provider. If that is not available, sites such as figshare offer free services to mint a DOI for your dataset. Subsequent versions of the Metadata Exchange will provide a DOI minting service.	False	False	["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

10.1093/ije/dyx196

contactPoint

Please provide a valid email address that can be used to coordinate data access requests.

title	guidance	is_list	required	type
Contact point	Organisations are expected to provide a dedicated email address associated with the data access request process. If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting. Note: An employee's email address can only be provided on a temporary basis and if one is provided, you must obtain explicit consent for this purpose.	False	True	["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]"]

Examples:

gateway@hdruk.ac.uk

alternateIdentifiers

Alternate dataset identifiers or local identifiers.

title	guidance	is_list	required	type
Alternate dataset identifiers	Alternate dataset identifiers or local identifiers.	False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null']

documentation

Documentation can include a rich text description of the dataset or links to media such as documents, images, presentations, videos or links to data dictionaries, profiles or dashboards. Organisations are required to confirm that they have permission to distribute any additional media.

description

A free-text description of the dataset.
A URL can also be provided as the description of the dataset.
Gateway Feature: Keywords and text may be extracted out of the description and indexed for search.

title	guidance	is_list	required	type
Description	- An HTML account of the data that provides context and scope of the data, limited to 10000 characters, and/or a resolvable URL that describes the dataset. - Additional information can be recorded and included using the Associated media field.	False	True	["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]"]

Examples:

CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice.

associatedMedia

Please provide any media associated with the Gateway Organisation using a valid URL for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. The following formats will be accepted .jpg, .png or .svg, .pdf, .xslx or .docx. Note: media asset can be hosted by the organisation or uploaded using the onboarding portal.

title	guidance	is_list	required	type
Associated media	- Please provide any media associated with the Gateway Organisation using a valid URL for the content. - This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. - Note: media assets should be hosted by the organisation. - Example: This could be a link to a PDF Document that describes methodology or further detail about the datasets, or a graph or chart that provides further context about the dataset. - If you are providing multiple links for associated media, we recommend that you separate these with a comma.	False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null']

Examples:

PDF document that describes study protocol - https://link.to/document.pdf

inPipeline

Indicate whether this dataset is currently available for Researchers to request access.

title	guidance	is_list	required	type
Dataset pipeline status	If a dataset is being prepared for sharing but not yet ready and available for researchers to apply for access, select 'Not available'. If Researchers can currently apply for access to the dataset, select 'Available'.	False	False	["Pipeline['Available','Not available']", 'null']

coverage

This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.

spatial

The geographical area covered by the dataset. It is recommended that links are to entries in one of the recommended standards:
- For locations in the UK: ONS standards
- For locations in other countries: ISO 3166-1 & ISO 3166-2

title	guidance	is_list	required	type
Geographic coverage	- The geographical area covered by the dataset. - Please provide a valid location. - For locations in the UK, this location should conform to ONS standards. - For locations in other countries we use ISO 3166-1 & ISO 3166-2.	False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List']

Examples:

United Kingdom
https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html

typicalAgeRangeMin

Please indicate the minimum age in years of participants in the dataset as a whole number (integer).

title	guidance	is_list	required	type
Minimum age range	- Please indicate the minimum of the age range in whole years of participants in the dataset. - What if my dataset has participants of all “All Ages” or “Any Ages”?: In that case, please enter 0.	False	False	['int', 'null']

Examples:

18

typicalAgeRangeMax

Please indicate the maximum age in years of participants in the dataset as a whole number (integer).

title	guidance	is_list	required	type
Maximum age range	- Please indicate the maximum of the age range in whole years of participants in the dataset. - What if my dataset has participants of all “All Ages” or “Any Ages”?: In that case, please enter 150.	False	False	['int', 'null']

Examples:

90

datasetCompleteness

The URL where a Researcher can learn more about the completeness of the dataset.

title	guidance	is_list	required	type
Dataset coverage/completeness/quality	If your organisation has a publicly available site which contains information on the completeness of a dataset, add that URL here. Example: https://bhfdatasciencecentre.org/dashboard/	False	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

https://bhfdatasciencecentre.org/dashboard/

materialType

The type of biospecimen saved from a biological entity.

title	guidance	is_list	required	type
Biological sample availability	Indicate the specimen type, can be several values from the list below: - Availability of physical samples associated with the dataset. - If samples are available, please indicate the types of samples that are available. - More than one type may be provided. - If samples are not yet available, please provide “Availability to be confirmed”. - If samples are not available, then please provide “Not available”. - Not available: Samples associated with the dataset are not available. - Bone marrow: Bone marrow samples associated with the data are available. - Cancer cell lines: Cancer cell line samples associated with the data are available. - CDNA/MRNA: CDNA/MRNA samples associated with the data are available. - Core biopsy: Core biopsy samples associated with the data are available. - DNA: DNA samples associated with the data are available. - Entire body organ: Entire body organ associated with the data are available. - Faeces: Faeces samples associated with the data are available. - Immortalized cell lines: Immortalized cell line samples associated with the data are available. - Isolated pathogen: Isolated pathogen associated with the data are available. - MicroRNA: MicroRNA samples associated with the data are available. - Peripheral blood cells: Peripheral blood cell samples associated with the data are available. - Plasma: Plasma samples associated with the data are available. - PM Tissue: PM Tissue samples associated with the data are available. - Primary cells: Primary cell samples associated with the data are available. - RNA: RNA samples associated with the data are available. - Saliva: Saliva samples associated with the data are available. - Serum: Serum samples associated with the data are available. - Swabs: Swab samples associated with the data are available. - Tissue: Tissue samples associated with the data are available. - Urine: Urine samples associated with the data are available. - Whole blood: Whole blood samples associated with the data are available. - Availability to be confirmed: Availability of samples is currently being confirmed. - Other: Other types of sample available.	True	False	["MaterialTypeCategoriesV2['None/not available','Bone marrow','Cancer cell lines','CDNA/MRNA','Core biopsy','DNA','Entire body organ','Faeces','Immortalized cell lines','Isolated pathogen','MicroRNA','Peripheral blood cells','Plasma','PM Tissue','Primary cells','RNA','Saliva','Serum','Swabs','Tissue','Urine','Whole blood','Availability to be confirmed','Other']"]

followUp

If known, what is the typical time span that a patient appears in the dataset (follow up period). In a prospective cohort study, after baseline information is collected, participants are followed “longitudinally” i.e. new information is collected about them for a period of time afterward. This is known as the “follow up period”. What is the typical time span of follow up, e.g. 1 year, 5 years? If there are multiple cohorts in the dataset with varying follow up periods, please provide the longest follow up period.

title	guidance	is_list	required	type
Follow-up	If known, please indicate the typical time span that a patient appears in the dataset (follow up period). -0 - 6 MONTHS: Data typically available for a patient over a 0-6 month period. -6 - 12 MONTHS: Data typically available for a patient over a 6-12 month period. -1 - 10 YEARS: Data typically available for a patient over a 1-10 year period. -> 10 YEARS: Data typically available for a patient for over a 10 year period. -CONTINUOUS: Data for patients is being regularly added to and updated. -UNKNOWN: Timespan is Unknown. -OTHER: Data available for a patient over another time period.	False	False	["FollowupV2['0 - 6 Months','6 - 12 Months','1 - 10 Years','> 10 Years','Unknown','Continuous','Other',null]", 'null']

pathway

Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.

title	guidance	is_list	required	type
Patient pathway description	- Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. - This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.	False	False	["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

provenance

Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.

origin

Coverage by origin (geographical and situations).

purpose

Please indicate the purpose(s) that the dataset was collected.

title	guidance	is_list	required	type
Purpose of dataset collection	- Research cohort: Data collected for a defined group of people. - Study: Data collected for a specific research study. - Disease registry: Data collected as part of a disease registry. - Trial: Data collected for as part of a clinical trial. - Care: Data collected as part of routine clinical care. - Audit: Data collected as part of an audit programme. - Administrative: Data collected for administrative and management information purposes. - Financial: Data collected either for payments or for billing. - Statutory: Data collected in compliance with statutory requirements. - Other: Data collected for other purpose.	True	False	["PurposeV2['Research cohort','Study','Disease registry','Trial','Care','Audit','Administrative','Financial','Statutory','Other',null]"]

datasetType

The topic areas to which the dataset content relates.

title	guidance	is_list	required	type
Dataset type	Types include those listed below. Datasets can have more than one type associated. - Health and disease: Includes any data related to mental health, cardiovascular, cancer, rare diseases, metabolic and endocrine, neurological, reproductive, maternity and neonatology, respiratory, immunity, musculoskeletal, vision, renal and urogenital, oral and gastrointestinal, cognitive function or hearing. - Treatments/Interventions: Includes any data related to treatment or interventions related to vaccines or which are preventative or therapeutic in nature. - Measurements/Tests: Includes any data related to laboratory or other diagnostics. - Imaging types: Includes any data related to CT, MRI, PET, x-ray, ultrasound or pathology imaging. - Imaging area of the body: Indicates whether the dataset relates to head, chest, arm abdomen or leg imaging. - Omics: Includes any data related to proteomics, transcriptomics, epigenomics, metabolomics, multiomics, metagenomics or genomics. - Socioeconomic: Includes any data related to education, crime and justice, ethnicity, housing, labour, ageing, economics, marital status, social support, deprivation, religion, occupation, finances or family circumstances. - Lifestyle: Includes any data related to smoking, physical activity, dietary habits or alcohol. - Registry: Includes any data related to disease registries for research, national disease registries, audits, or birth and deaths records. - Environment and energy: Includes any data related to the monitoring or study of environmental or energy factors or events. - Information and communication: Includes any data related to the study or application of information and communication. - Politics: Includes any data related to political views, activities, voting, etc.	True	True	["DatasetTypeV2['Health and disease','Treatments/Interventions','Measurements/Tests','Imaging types','Imaging area of the body','Omics','Socioeconomic','Lifestyle','Registry','Environment and energy','Information and communication','Politics']"]

Examples:

Health and disease

datasetSubType

The sub-type of the dataset content. Multiomics is selected on behalf of the submitter if more that one omics datasetSubType ('proteomics', 'transcriptomics', 'epigenomics', 'metabolomics', 'metagenomics', 'genomics', 'lipidomics') is selected

title	guidance	is_list	required	type
Dataset sub-type	Sub-types include those listed below under each data type. Datasets can have more than one sub-type associated. - Health and disease: Includes any data related to mental health, cardiovascular, cancer, rare diseases, metabolic and endocrine, neurological, reproductive, maternity and neonatology, respiratory, immunity, musculoskeletal, vision, renal and urogenital, oral and gastrointestinal, cognitive function or hearing. - Treatments/Interventions: Includes any data related to treatment or interventions related to vaccines or which are preventative or therapeutic in nature. - Measurements/Tests- Includes any data related to laboratory or other diagnostics. - Imaging types: Includes any data related to CT, MRI, PET, x-ray, ultrasound or pathology imaging. - Imaging area of the body: Indicates whether the dataset relates to head, chest, arm abdomen or leg imaging. - Omics: Includes any data related to proteomics, transcriptomics, epigenomics, metabolomics, multiomics, metagenomics or genomics. Multiomics is selected on behalf of the submitter if more that one omics datasetSubType is selected. - Socioeconomic: Includes any data related to education, crime and justice, ethnicity, housing, labour, ageing, economics, marital status, social support, deprivation, religion, occupation, finances or family circumstances. - Lifestyle: Includes any data related to smoking, physical activity, dietary habits or alcohol. - Registry: Includes any data related to disease registries for research, national disease registries, audits, or birth and deaths records. - Environment and energy: Includes any data related to the monitoring or study of environmental or energy factors or events. - Information and communication: Includes any data related to the study or application of information and communication. - Politics**: Includes any data related to political views, activities, voting, etc.	True	False	["DatasetSubType['Mental health','Cardiovascular','Cancer','Rare diseases','Metabolic and endocrine','Neurological','Reproductive','Maternity and neonatology','Respiratory','Immunity','Musculoskeletal','Vision','Renal and urogenital','Oral and gastrointestinal','Cognitive function','Hearing','Others','Vaccines','Preventive','Therapeutic','Laboratory','Other diagnostics','CT','MRI','PET','X-ray','Ultrasound','Pathology','Head','Chest','Arm','Abdomen','Leg','Proteomics','Transcriptomics','Epigenomics','Metabolomics','Metagenomics','Genomics','Lipidomics','Education','Crime and justice','Ethnicity','Housing','Labour','Ageing ','Economics','Marital status','Social support','Deprivation','Religion','Occupation','Finances','Family circumstance','Smoking','Physical activity','Dietary habits','Alcohol','Disease registry (research)','National disease registries and audits','Births and deaths','Not applicable']"]

source

Please indicate the source of the data extraction.

title	guidance	is_list	required	type
Source of data extraction	- EPR: Data Extracted from Electronic Patient Record. - Electronic survey: Data has been extracted from electronic surveys. - LIMS: Data has been extracted from a laboratory information management system. - Paper-based: Data has been extracted from paper forms. - Free text NLP: Data has been extracted from unstructured freetext using natural language processing. - Machine generated: Data has been machine generated i.e. imaging. - Other: Data has been extracted by other means.	True	False	["SourceV2['EPR','Electronic survey','LIMS','Paper-based','Free text NLP','Machine generated','Other']"]

collectionSource

Please indicate the setting(s) where data was collected. Multiple settings may be provided.

title	guidance	is_list	required	type
Collection source setting	- Cohort, study, trial: Cohort, study or trial data collection as part of protocol. - Clinic: Specific clinic such as antenatal clinic. - Primary care - Referrals: General medical practitioner referral to another service. - Primary care - Clinic: General medical practitioner practice. - Primary care - Out of hours: General medical practitioner care or advice outside of standard hours. - Secondary care - Accident and emergency: Accident emergency department. - Secondary care - Outpatients: Outpatient care. - Secondary care - In-patients: In-patient care. - Secondary care - Ambulance: Care provided in association with ambulance service. - Secondary care - ICU: Intensive care units, also referred to as critical care units (CCUs) or intensive therapy units (ITUs). - Prescribing - Community pharmacy: Pharmacy based in the community. - Prescribing - Community pharmacy: Pharmacy based in a hospital setting. - Patient report outcome: Reported by patient. - Wearables: Data collection devices worn on the body. - Local authority: Local authority or entity associated with a local authority. - National government: National government or entity associated with the national government. - Community: Community settings. - Services: Services such as drug misuse or blood transfusion. - Home: Home setting. - Private: Private medical clinic. - Social care - Health care at home: service provided in the home or residence of a person. - Social care - Other social data: service provided in a setting outside of the person's home or residence. - Census: collected as part of census. - Other: Other setting.	True	False	["SettingV2['Cohort, study, trial','Clinic','Primary care - Referrals','Primary care - Clinic','Primary care - Out of hours','Secondary care - Accident and Emergency','Secondary care - Outpatients','Secondary care - In-patients','Secondary care - Ambulance','Secondary care - ICU','Prescribing - Community pharmacy','Prescribing - Hospital','Patient report outcome','Wearables','Local authority','National government','Community','Services','Home','Private','Social care - Health care at home','Social care - Other social data','Census','Other',null]"]

imageContrast

Indicate whether usage of imaging contrast is captured within the dataset.

title	guidance	is_list	required	type
Image contrast	If any contrast media or contrast agents were used in creating the images within the dataset and the contrast is known, mark 'Yes'. If this information is not known or not captured, indicate 'Not stated'. If there was no contrast used in the images, mark 'No'.	False	False	["Ternary['Yes','No','Not stated']", 'null']

temporal

Dates and other temporal coverage information.

publishingFrequency

Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/

title	guidance	is_list	required	type
Publishing frequency	Please indicate the frequency of publishing. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/. Options: - Static: Dataset published once. - Irregular: Dataset published at uneven intervals. - Continuous: Dataset published without interruption. - Biennial: Dataset published every two years. - Annual: Dataset published occurs once a year. - Biannual: Dataset published twice a year. - Quarterly: Dataset published every three months. - Bimonthly: Dataset published every two months. - Monthly: Dataset published once a month. - Biweekly: Dataset published every two weeks. - Weekly: Dataset published once a week. - Twice weekly: Dataset published twice a week. - Daily: Dataset published once a day. - Other: Dataset published using other interval.	False	True	["PeriodicityV2['Static','Irregular','Continuous','Biennial','Annual','Biannual','Quarterly','Bimonthly','Monthly','Biweekly','Weekly','Twice a week','Daily','Other',null]"]

Examples:

Continuous

distributionReleaseDate

Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.

title	guidance	is_list	required	type
Distribution release date	- Please indicate the frequency the dataset is published. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/	False	False	['date', 'datetime', 'null']

Examples:

2024-10-24T00:00:00.000Z

startDate

The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.

title	guidance	is_list	required	type
Start date	- The start of the time period that the dataset provides coverage for. - If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.	False	True	['date', 'datetime']

Examples:

2024-10-24T00:00:00.000Z

endDate

The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.

title	guidance	is_list	required	type
End date	- The end of the time period that the dataset provides coverage for. - If the dataset is “Continuous” and has no known end date, please leave blank. - If there are multiple cohorts in the dataset with varying end dates, please provide the latest date.	False	False	['date', 'datetime', "EndDateEnum['CONTINUOUS',null]", 'null']

Examples:

2024-10-24T00:00:00.000Z

timeLag

Please indicate the typical time-lag between an event and the data for that event appearing in the dataset.

title	guidance	is_list	required	type
Time lag	Please indicate the typical time-lag between an event and the data for that event appearing in the dataset. - Less than 1 week: Typical time lag of less than a week. - 1-2 weeks: Typical time-lag of one to two weeks. - 2-4 weeks: Typical time-lag of two to four weeks. - 1-2 months: Typical time-lag of one to two months. - 2-6 months: Typical time-lag of two to six months. - 6 months plus: Typical time-lag of more than six months. - Variable: Variable time-lag. - Not applicable: Not Applicable i.e. static dataset. - Other: Other time-lag.	False	True	["TimeLagV2['Less than 1 week','1-2 weeks','2-4 weeks','1-2 months','2-6 months','More than 6 months','Variable','Not applicable','Other']"]

Examples:

Not applicable

accessibility

Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.

usage

This section includes information about how the data can be used and how it is currently being used.

dataUseLimitation

Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the Data Use Ontology to include a value for NO LINKAGE.

title	guidance	is_list	required	type
Data use limitation	Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. - General research use: This data use limitation indicates that use is allowed for general research use for any research purpose. - Genetic studies only: This data use limitation indicates that use is limited to genetic studies only (i.e., no phenotype-only research). - No general methods research: This data use limitation indicates that use includes methods development research(e.g., development of software or algorithms) only within the bounds of other use limitations. - No restriction: This data use limitation indicates there is no restriction on use. - Research-specific restrictions: This data use limitation indicates that use is limited to studies of a certain research type. - Research use only: This data use limitation indicates that use is limited to research purposes (e.g., does not include its use in clinical care). - No linkage: This data use limitation indicates there is a restriction on linking to any other datasets	True	False	["DataUseLimitationV2['General research use','Commercial research use','Genetic studies only','No general methods research','No restriction','Geographical restrictions','Institution-specific restrictions','Not for profit use','Project-specific restrictions','Research-specific restrictions','User-specific restrictions','Research use only','No linkage']"]

dataUseRequirements

Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.

title	guidance	is_list	required	type
Data use requirements	- Please indicate if there are any additional conditions set for use if any, multiple requirements may be provided. - Please ensure that these restrictions are documented in access rights information. - Collaboration required: This requirement indicates that the requestor must either agree to join a research consortium or collaborate with the primary study investigator(s). - Ethics approval required: This requirement indicates that the requestor must provide documentation of local institutional review board (IRB)/ ethics review board (ERB) approval. - Geographical restrictions: This requirement indicates that use is limited to within a specific geographic region. - Institution-specific restrictions: This requirement indicates that use is limited to use within an approved institution. - Not for profit use: This requirement indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use. - Project-specific restrictions: This requirement indicates that use is limited to use within an approved project. - Publication moratorium: This requirement indicates that requestor agrees not to publish results of studies until a specific date. - Publication required: This requirement indicates that requestor agrees to make results of studies using the data available to the larger scientific community. - Return to database or resource: This requirement indicates that the requestor must return derived/enriched data to the database/resource. - Time limit on use: This requirement indicates that use is approved for a specific number of months. - User-specific restriction: This requirement indicates that use is limited to use by approved users.	True	False	["DataUseRequirementsV2['Collaboration required','Project-specific restrictions','Ethics approval required','Institution-specific restrictions','Geographical restrictions','Publication moratorium','Publication required','Return to database or resource','Time limit on use','Disclosure control','Not for profit use','User-specific restriction']"]

resourceCreator

Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.

title	guidance	is_list	required	type
Citation requirements	- Please provide the text that you would like included as part of any citation that credits this dataset. - This is typically just the name of the publisher. No employee details should be provided. - To add multiple entries, please click on '+' symbol to enter each separate website. - Example: National Services Scotland	False	False	["ShortDescription[{'anyOf': [{'maxLength': 1000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null']

Examples:

National Services Scotland

access

Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.

accessRights

Please provide details for the data access rights.

title	guidance	is_list	required	type
Access rights	- The URL of a webpage where the data access request process and/or guidance is provided. If there is more than one access process i.e. industry vs academic please provide both separated by a comma. - If such a resource or the underlying process doesn’t exist, please provide “In Progress”, until both the process and the documentation are ready.	False	True	["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]"]

Examples:

In Progress

accessServiceCategory

The method a Researcher will use to access the dataset, if approved.

title	guidance	is_list	required	type
Access method category	Select the category which best matches how a Researcher will access the dataset, if approved for access. If the access method changes based on the data required for the project (e.g. the dataset can be shared via secure email if the extract is fully anonymised, but must be accessed via a TRE/SDE if the extract is only pseudonymised) then select 'varies based on project'.	False	False	["AccessService['TRE/SDE','Direct access','Open access','Varies based on project']", 'null']

Examples:

TRE/SDE

accessService

Please provide a brief description of the data access services that are available including: environment that is currently available to researchers; additional consultancy and services; any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.

title	guidance	is_list	required	type
Access service description	Please provide a brief description of the data access services that are available including: - environment that is currently available to researchers - additional consultancy and services - any indication of costs associated If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers. Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.	False	False	["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

https://re-docs.genomicsengland.co.uk/tutorials/
https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/national-safe-haven-nsh/

accessRequestCost

Please provide link(s) to a webpage or description detailing the service or cost model for processing data access requests.

title	guidance	is_list	required	type
Access request cost	This information should cover the costs and/or services available to different audiences (i.e. academic, commercial, non-UK, etc.). This can be in the form of text or a URL.	False	False	["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

deliveryLeadTime

Please provide an indication of the typical processing times based on the types of requests typically received.

title	guidance	is_list	required	type
Time to dataset access	- Less than 1 week: Access request process typically processed in less than a week. - 1-2 weeks: Access request process typically processed in one to two weeks. - 2-4 weeks: Access request process typically processed in two to four weeks. - 1-2 months: Access request process typically processed in one to two months. - 2-6 months: Access request process typically processed in two to six months. - More than 6 months: Access request process typically processed in more than six months. - Variable: Access request lead time is variable. - Not applicable: Access request process duration is not applicable. - Other: If the typical timeframe does not fit into the broad ranges i.e. lightweight application vs linked data application, please choose “Other” and indicate the typical timeframe within the description for the dataset.	False	False	["DeliveryLeadTimeV2['Less than 1 week','1-2 weeks','2-4 weeks','1-2 months','2-6 months','More than 6 months','Variable','Not applicable','Other']", 'null']

jurisdiction

Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.

title	guidance	is_list	required	type
Jurisdiction	A full list of country codes can be found here (alpha-2 column): https://www.iso.org/obp/ui/#search/code/	True	False	["Isocountrycode[{'pattern': '^[A-Z]{2}(-[A-Z]{2,3})?$', 'type': 'string'}]"]

dataController

Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.

title	guidance	is_list	required	type
Data Controller	- Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed. - Notes: For most organisations this will be the same as the Data Custodian of the dataset. If this is not the case, please indicate that there is a different controller. - If there is a different controller please complete the Data Processor attribute to indicate if the Data Custodian is a Processor rather than the Data Controller. - In some cases, there may be multiple Data Controllers i.e. GP data. If this is the case, please indicate the fact in a free-text field and describe the data sharing arrangement or a link to it, so that this can be understood by research users. - Example: NHS England	False	False	["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

NHS England

dataProcessor

A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.

title	guidance	is_list	required	type
Data Processor	A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller. - Notes: Required to complete if the Data Custodian is the Data Processor rather than the Data Controller. - If the Publisher is also the Data Controller please provide “Not Applicable”. - Examples: Not Applicable, SAIL	False	False	["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

Not Applicable
SAIL

formatAndStandards

Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.

vocabularyEncodingScheme

List any relevant terminologies / ontologies / controlled vocabularies, such as ICD 10 Codes, NHS Data Dictionary National Codes or SNOMED CT International, that are being used by the dataset. If the controlled vocabularies are local standards, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. Notes: More than one vocabulary may be provided.

title	guidance	is_list	required	type
Controlled vocabulary	- List any relevant terminologies / ontologies / controlled vocabularies, such as ICD 10 Codes, NHS Data Dictionary National Codes or SNOMED CT International, that are being used by the dataset. - If the controlled vocabularies are local standards, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. - Notes: More than one vocabulary may be provided. - Local: Local Coding Standard. - OPCS4: https://www.datadictionary.nhs.uk/web_site_content/supporting_information/clinical_coding/opcs_classification_of_interventions_and_procedures.asp. - READ: https://digital.nhs.uk/services/terminology-and-classifications/read-codes. - SNOMED CT: http://www.snomed.org/. - SNOMED RT: https://confluence.ihtsdotools.org/display/DOCGLOSS/SNOMED+RT. - DM+D: https://digital.nhs.uk/data-and-information/information-standards/information-standards-and-data-collections-including-extractions/publications-and-notifications/standards-and-collections/scci0052-dictionary-of-medicines-and-devices-dm-d. - NHS National Codes: https://www.datadictionary.nhs.uk/. - ODS: https://digital.nhs.uk/services/organisation-data-service. - LOINC: https://loinc.org/. - ICD10: https://www.who.int/classifications/icd/icdonlineversions/en/. - ICD10CM: https://www.cdc.gov/nchs/icd/icd10cm.htm. - ICD10PCS: https://ec.europa.eu/eip/ageing/standards/healthcare/e-health/icd-10-pcs_en. - ICD9CM: https://www.cdc.gov/nchs/icd/icd9cm.htm. - ICD9: https://www.cdc.gov/nchs/icd/icd9.htm. - ICDO3: https://www.who.int/classifications/icd/adaptations/oncology/en/. - AMT: https://www.digitalhealth.gov.au/about-the-agency/tenders-and-offers/community-pharmacy-software-industry-partnership-offer/Webinar%20-%20Australian%20Medicines%20Terminology%20(AMT)%20and%20Implementation%20Options%2001032017.pdf. - APC: https://www.acep.org/administration/reimbursement/reimbursement-faqs/apc-ambulatory-payment-classifications-faq/. - ATC: https://www.whocc.no/atc_ddd_index/. - CIEL: https://github.com/OpenConceptLab/ocl_web/wiki/CIEL. - HPO: https://hpo.jax.org/app/. - CPT4: https://www.cms.gov/Regulations-and-Guidance/Legislation/CLIA/Downloads/SubjecttoCLIA.pdf. - DPD: https://health-products.canada.ca/dpd-bdpp/index-eng.jsp. - DRG: http://www.euro.who.int/__data/assets/pdf_file/0004/162265/e96538.pdf. - HEMONC: https://hemonc.org/wiki/Main_Page. - JMDC: https://www.jmdc.co.jp/en/. - KCD7: https://forums.ohdsi.org/t/adding-kcd7-code-korean-icd-10-to-the-omop-vocabulary/7576. - MULTUM: https://www.cerner.com/solutions/drug-database. - NAACCR: https://www.naaccr.org/. - NDC: https://www.fda.gov/drugs/drug-approvals-and-databases/national-drug-code-directory. - NDFRT <:https://www.nlm.nih.gov/research/umls/sourcereleasedocs/current/NDFRT/index.html>. - OXMIS: https://oxrisk.com/oxmis/. - RXNORM: https://www.nlm.nih.gov/research/umls/rxnorm/index.html. - RXNORM EXTENSION: https://www.nlm.nih.gov/research/umls/rxnorm/index.html. - SPL: https://www.fda.gov/industry/fda-resources-data-standards/structured-product-labeling-resources. - Other: Please indicate if there is another standard that you are using. This will trigger a support ticket where you can request the addition of the terminology to the HOP. - NHS Scotland National Codes: https://www.ndc.scot.nhs.uk/Data-Dictionary/. - NHS Wales National Codes: http://www.datadictionary.wales.nhs.uk/	True	True	["ControlledVocabularyEnum['LOCAL','OPCS4','READ','SNOMED CT','SNOMED RT','DM PLUS D','DM+D','NHS NATIONAL CODES','NHS SCOTLAND NATIONAL CODES','NHS WALES NATIONAL CODES','ODS','LOINC','ICD10','ICD10CM','ICD10PCS','ICD9CM','ICD9','ICDO3','AMT','APC','ATC','CIEL','HPO','CPT4','DPD','DRG','HEMONC','JMDC','KCD7','MULTUM','NAACCR','NDC','NDFRT','OXMIS','RXNORM','RXNORM EXTENSION','SPL','OTHER']"]

Examples:

LOCAL
ICD10

conformsTo

List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition.

title	guidance	is_list	required	type
Alignment with standardised data models	- List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. - If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. - HL7 FHIR: https://www.hl7.org/fhir/. - HL7 V2: https://www.hl7.org/implement/standards/product_section.cfm?section=13. - HL7 CDA: https://www.hl7.org/implement/standards/product_section.cfm?section=10. - HL7 CCOW: https://www.hl7.org/implement/standards/product_section.cfm?section=16. - DICOM: https://www.dicomstandard.org/. - I2B2: https://www.i2b2.org/. - IHE: https://www.ihe.net/resources/profiles/. - OMOP: https://www.ohdsi.org/data-standardization/the-common-data-model/. - openEHR: https://www.openehr.org/. - Sentinel: https://www.sentinelinitiative.org/sentinel/data/distributed-database-common-data-model. - PCORnet: https://pcornet.org/data-driven-common-model/. - CDISC: https://www.cdisc.org/standards/data-exchange/odm. - Local: In-house developed data model. - Other: Other standardised data model. - NHS Data Dictionary: https://www.datadictionary.nhs.uk/. - NHS Scotland Data Dictionary: https://www.ndc.scot.nhs.uk/Data-Dictionary/. - NHS Wales Data Dictionary: https://www.datadictionary.wales.nhs.uk/.	True	True	["StandardisedDataModelsEnum['HL7 FHIR','HL7 V2','HL7 CDA','HL7 CCOW','LOINC','DICOM','I2B2','IHE','OMOP','OPENEHR','SENTINEL','PCORNET','CDISC','NHS DATA DICTIONARY','NHS SCOTLAND DATA DICTIONARY','NHS WALES DATA DICTIONARY','LOCAL','OTHER']"]

Examples:

LOCAL
NHS DATA DICTIONARY

language

This should list all the languages in which the dataset metadata and underlying data is made available complaint with ISO 639.

title	guidance	is_list	required	type
Language	https://www.iso.org/iso-639-language-code - aa: Afar - ab: Abkhazian - af: Afrikaans - ak: Akan - sq: Albanian - am: Amharic - ar: Arabic - an: Aragonese - hy: Armenian - as: Assamese - av: Avaric - ae: Avestan - ay: Aymara - az: Azerbaijani - ba: Bashkir - bm: Bambara - eu: Basque - be: Belarusian - bn: Bengali - bh: Bihari languages - bi: Bislama - bo: Tibetan - bs: Bosnian - br: Breton - bg: Bulgarian - my: Burmese - ca: Catalan; Valencian - cs: Czech - ch: Chamorro - ce: Chechen - zh: Chinese - cu: Church Slavic; Old Slavonic; Church Slavonic; Old Bulgarian; Old Church Slavonic - cv: Chuvash - kw: Cornish - co: Corsican - cr: Cree - cy: Welsh - cs: Czech - da: Danish - de: German - dv: Divehi; Dhivehi; Maldivian - nl: Dutch; Flemish - dz: Dzongkha - el: Greek, Modern (1453-) - en: English - eo: Esperanto - et: Estonian - eu: Basque - ee: Ewe - fo: Faroese - fa: Persian - fj: Fijian - fi: Finnish - fr: French - fy: Western Frisian - ff: Fulah - ka: Georgian - de: German - gd: Gaelic; Scottish Gaelic - ga: Irish - gl: Galician - gv: Manx - el: Greek, Modern (1453-) - gn: Guarani - gu: Gujarati - ht: Haitian; Haitian Creole - ha: Hausa - ho: Hiri Motu - hr: Croatian - hu: Hungarian - hy: Armenian - ig: Igbo - is: Icelandic - io: Ido - ii: Sichuan Yi; Nuosu - iu: Inuktitut - ie: Interlingue; Occidental - ia: Interlingua (International Auxiliary Language Association) - id: Indonesian - ik: Inupiaq - is: Icelandic - it: Italian - jv: Javanese - ja: Japanese - kl: Kalaallisut; Greenlandic - kn: Kannada - ks: Kashmiri - ka: Georgian - kr: Kanuri - kk: Kazakh - km: Central Khmer - ki: Kikuyu; Gikuyu - rw: Kinyarwanda - ky: Kirghiz; Kyrgyz - kv: Komi - kg: Kongo - ko: Korean - kj: Kuanyama; Kwanyama - ku: Kurdish - lo: Lao - la: Latin - lv: Latvian - li: Limburgan; Limburger; limburgish - ln: Lingala - lt: Lithuanian - lb: Luxembourgish; Letzeburgesch - lu: Luba-Katanga - lg: Ganda - mk: Macedonian - mh: Marshallese - ml: Malayalam - mi: Maori - mr: Marathi - ms: Malay - mk: Macedonian - mg: Malagasy - mt: Maltese - mn: Mongolian - mi: Maori - ms: Malay - my: Burmese - na: Nauru - nv: Navajo; Navaho - nr: Ndebele, South; South Ndebele - nd: Ndebele, North; North Ndebele - ng: Ndonga - ne: Nepali - nl: Dutch; Flemish - nn: Norwegian Nynorsk; Nynorsk, Norwegian - nb: Bokmål, Norwegian; Norwegian Bokmål - no: Norwegian - ny: Chichewa; Chewa; Nyanja - oc: Occitan (post 1500) - oj: Ojibwa - or: Oriya - om: Oromo - os: Ossetian; Ossetic - pa: Panjabi; Punjabi - fa: Persian - pi: Pali - pl: Polish - pt: Portuguese - ps: Pushto; Pashto - qu: Quechua - rm: Romansh - ro: Romanian; Moldavian; Moldovan - rn: Rundi - ru: Russian - sg: Sango - sa: Sanskrit - si: Sinhala; Sinhalese - sk: Slovak - sl: Slovenian - se: Northern Sami - sm: Samoan - sn: Shona - sd: Sindhi - so: Somali - st: Sotho, Southern - es: Spanish; Castilian - sq: Albanian - sc: Sardinian - sr: Serbian - ss: Swati - su: Sundanese - sw: Swahili - sv: Swedish - ty: Tahitian - ta: Tamil - tt: Tatar - te: Telugu - tg: Tajik - tl: Tagalog - th: Thai - bo: Tibetan - ti: Tigrinya - to: Tonga (Tonga Islands) - tn: Tswana - ts: Tsonga - tk: Turkmen - tr: Turkish - tw: Twi - ug: Uighur; Uyghur - uk: Ukrainian - ur: Urdu - uz: Uzbek - ve: Venda - vi: Vietnamese - vo: Volapük - cy: Welsh - wa: Walloon - wo: Wolof - xh: Xhosa - yi: Yiddish - yo: Yoruba - za: Zhuang; Chuang - zh: Chinese - zu: Zulu	True	True	["LanguageEnum['aa','ab','ae','af','ak','am','an','ar','as','av','ay','az','ba','be','bg','bh','bi','bm','bn','bo','br','bs','ca','ce','ch','co','cr','cs','cu','cv','cy','da','de','dv','dz','ee','el','en','eo','es','et','eu','fa','ff','fi','fj','fo','fr','fy','ga','gd','gl','gn','gu','gv','ha','he','hi','ho','hr','ht','hu','hy','hz','ia','id','ie','ig','ii','ik','io','is','it','iu','ja','jv','ka','kg','ki','kj','kk','kl','km','kn','ko','kr','ks','ku','kv','kw','ky','la','lb','lg','li','ln','lo','lt','lu','lv','mg','mh','mi','mk','ml','mn','mr','ms','mt','my','na','nb','nd','ne','ng','nl','nn','no','nr','nv','ny','oc','oj','om','or','os','pa','pi','pl','ps','pt','qu','rm','rn','ro','ru','rw','sa','sc','sd','se','sg','si','sk','sl','sm','sn','so','sq','sr','ss','st','su','sv','sw','ta','te','tg','th','ti','tk','tl','tn','to','tr','ts','tt','tw','ty','ug','uk','ur','uz','ve','vi','vo','wa','wo','xh','yi','yo','za','zh','zu']"]

Examples:

en

format

If multiple formats are available please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml Note: If your file format is not included in the current list of formats, please indicate other. If you are using the HOP you will be directed to a service desk page where you can request your additional format. If not please go to: https://metadata.atlassian.net/servicedesk/customer/portal/4 to request your format.

title	guidance	is_list	required	type
Format	- If multiple formats are available, please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml. - Please enter one format type at a time and click Add New Field to add further keywords. - Note: If your file format is not included in the current list of formats, please indicate other. - Example: text/tab-separated-values, application/sql, text/csv, image/diacom-rle	True	True	["Format[{'minLength': 1, 'type': 'string'}]"]

Examples:

text/tab-separated-values
application/sql
text/csv
image/diacom-rle

enrichmentAndLinkage

This section includes information about related datasets that may have previously been linked, as well as indicating if there is the opportunity to link to other datasets in the future. If a dataset has been enriched and/or derivations, scores and existing tools are available this section allows providers to indicate this to researchers.

derivedFrom

If applicable, please provide DOIs or links to datasets from which data in this dataset has been derived or calculated from.

pid

None

title	guidance	is_list	required	type
Persistent identifier of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

title

None

title	guidance	is_list	required	type
Title of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

url

None

title	guidance	is_list	required	type
Url of a dataset		False	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null']

isPartOf

This relationship indicates that the dataset is a component or subset of a broader collection of related datasets. For example, clinical trial data for a specific drug may be part of a larger database of pharmaceutical research data. Complete only if the dataset is part of a group or family of datasets i.e. Hospital Episode Statistics has several constituents. If your dataset is not part of a group, please enter “NOT APPLICABLE” Example: Hospital Episodes Statistics datasets (A&E, APC, OP, AC MSDS).

Examples:

Hospital Episodes Statistics datasets (A&E, APC, OP, AC MSDS)

pid

None

title	guidance	is_list	required	type
Persistent identifier of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

title

None

title	guidance	is_list	required	type
Title of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

url

None

title	guidance	is_list	required	type
Url of a dataset		False	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null']

linkableDatasets

If applicable, please provide the DOI of other datasets that have previously been linked to this dataset and their availability. If no DOI is available, please provide the title of the datasets that can be linked.

pid

None

title	guidance	is_list	required	type
Persistent identifier of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

title

None

title	guidance	is_list	required	type
Title of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

url

None

title	guidance	is_list	required	type
Url of a dataset		False	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null']

similarToDatasets

Datasets that are similar to each other in some way, collect similar patients, regional equivalent etc.

pid

None

title	guidance	is_list	required	type
Persistent identifier of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

title

None

title	guidance	is_list	required	type
Title of a dataset		False	False	["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null']

url

None

title	guidance	is_list	required	type
Url of a dataset		False	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null']

investigations

Please provide link to any active projects that are using the dataset.

title	guidance	is_list	required	type
Investigations	- Please provide the website address(es) which document information related to active projects utilising the dataset. - Please split your existing list of citations into separate fields. - To add multiple entries, type in each website and press enter to add it to the list. - Example: https://dataloch.org/insights/projects-delivered/data-driven-innovation-multi-morbidity-report-partner-gps	True	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"]

tools

Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. Multiple tools may be provided. Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/

title	guidance	is_list	required	type
Tools	- Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. - Multiple tools may be provided. - Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/	True	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"]

publicationAboutDataset

DOIs for publications which describe the dataset.

title	guidance	is_list	required	type
Publication about the dataset	- Please provide the DOIs for publications which describe the dataset. - Please split your existing list of citations into separate fields. - To add multiple entries, type in each citation and press enter to add it to the list. - Example: <10.1093/ije/dyab028>	True	False	["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]"]

Examples:

10.1093/ije/dyab028

publicationUsingDataset

DOIs for publications which use the dataset for analysis.

title	guidance	is_list	required	type
Publication using the dataset	- Please provide the DOIs for publications which have used the dataset in their analysis. - Please split your existing list of citations into separate fields. - To add multiple entries, type in each citation and press enter to add it to the list. - Example: <10.1001/jamapediatrics.2016.3633>	True	False	["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]"]

Examples:

10.1001/jamapediatrics.2016.3633

observations

This section provides an overview of observations of your dataset linked to specific points in time. Multiple observations about the dataset are encouraged to be provided, including multiple observations of the same property at different timepoints. At least one observation is required.

observedNode

Please select one of the following broad notes for your measured observation. Indicating whether the measured property is a recording of unique persons, events, findings or scans per modality.

title	guidance	is_list	required	type
Dataset volume measure	- Persons: Unique persons recorded in the dataset - Events: Unique events such as procedures and prescriptions within the dataset -Findings: Unique findings included in the dataset such as diagnoses' -Number of scans per modality: Unique scans for a specified imaging method modality (e.g. 12 x-rays)	False	True	["StatisticalPopulationConstrainedV2['Persons','Events','Findings','Number of scans per modality']"]

Examples:

Persons

measuredValue

An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset.

title	guidance	is_list	required	type
Measured value	An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset.	False	True	['int']

Examples:

1000

disambiguatingDescription

If required, please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. Limited to 500 characters.

title	guidance	is_list	required	type
Disambiguating description	If required please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population.	False	False	["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null']

observationDate

Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000.

title	guidance	is_list	required	type
Observation date	Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000.	False	True	['date', 'datetime']

Examples:

2024-10-24

measuredProperty

Descriptive term for the observation property measured. For example, people, procedures, x-rays, or diagnosis of type 1 diabetes. This could also be a specific SNOMED CT term.

title	guidance	is_list	required	type
Measured property	Descriptive term for the observation property measured.	False	True	['MeasuredProperty[{}]']

Examples:

Count

structuralMetadata

Descriptions of all tables and data elements that can be included in the dataset.

tables

Tables in the dataset

name

The name of a table in a dataset.

title	guidance	is_list	required	type
Table name		False	False	['str', 'null']

description

A description of a table in a dataset.

title	guidance	is_list	required	type
Table description		False	False	['str', 'null']

columns

A list of columns contained within a table in a dataset.

name

The name of a column in a table.

title	guidance	is_list	required	type
Column name		False	True	['Name[{}]']

dataType

The data type of values in the column.

title	guidance	is_list	required	type
Data type		False	True	['str']

description

A description of a column in a table.

title	guidance	is_list	required	type
Column description		False	False	['str', 'null']

sensitive

A True or False value, indicating if the field is sensitive or not.

title	guidance	is_list	required	type
Sensitive		False	True	['bool']

values

Values in a dataset.

name

Unique value in a column.

title	guidance	is_list	required	type
Value name		False	True	['Name[{}]']

description

A description of a unique value in a column.

title	guidance	is_list	required	type
Value description		False	False	['str', 'null']

frequency

The frequency of occurrance of a value in a column.

title	guidance	is_list	required	type
Value frequency		False	False	['int', 'null']

syntheticDataWebLink

Links to locations of information and or raw downloads of synthetic data associated with this dataset.

title	guidance	is_list	required	type
Synthetic data web links		True	False	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"]

demographicFrequency

An object containing demographic frequency data categorised by age, ethnicity, and disease attributes.

age

Array of age bins and their corresponding counts.

bin

None

title	guidance	is_list	required	type
Age grouping		False	True	["AgeEnum['0-6 days','7-27 days','1-11 months','1-4 years','5-9 years','10-14 years','15-19 years','20-24 years','25-29 years','30-34 years','35-39 years','40-44 years','45-49 years','50-54 years','55-59 years','60-64 years','65-69 years','70-74 years','75-79 years','80-84 years','85-89 years','90-94 years','95-99 years','100+ years']"]

Examples:

30-34 years

count

None

title	guidance	is_list	required	type
Age count		False	True	['int']

Examples:

1000

ethnicity

Array of ethnicity bins and their corresponding counts.

bin

None

title	guidance	is_list	required	type
Ethnicity grouping		False	True	["EthnicityEnum['White - British','White - Irish','White - Any other White background','Mixed - White and Black Caribbean','Mixed - White and Black African','Mixed - White and Asian','Mixed - Any other mixed background','Asian or Asian British - Indian','Asian or Asian British - Pakistani','Asian or Asian British - Bangladeshi','Asian or Asian British - Any other Asian background','Black or Black British - Caribbean','Black or Black British - African','Black or Black British - Any other Black background','Other Ethnic Groups - Chinese','Other Ethnic Groups - Any other ethnic group','Not stated','Not known']"]

Examples:

Black or Black British - Any other Black background

count

None

title	guidance	is_list	required	type
Ethnicity count		False	True	['int']

Examples:

1000

disease

Array of diseases and their corresponding counts.

diseaseCode

None

title	guidance	is_list	required	type
Disease code		False	True	['str', 'int']

Examples:

J45

diseaseCodeVocabulary

None

title	guidance	is_list	required	type
Disease code vocabulary		False	True	["DiseaseCodeEnum['ICD10','SNOMED CT','MeSH']"]

Examples:

ICD10

count

None

title	guidance	is_list	required	type
Disease count		False	True	['int']

Examples:

1000

omics

Omics

assay

The specific 'omics assay that generated the dataset.

title	guidance	is_list	required	type
Omics assay	The specific 'omics assay that generated the dataset. If the assay used to generate your dataset is not listed, please contract the gateway team by submitting an enquiry.	False	False	["Assay['NMR spectroscopy','Mass-spectrometry','Whole genome sequencing','Exome sequencing','Genotyping by array','Transcriptome profiling by high-throughput sequencing','Transcriptome profiling by array','Amplicon sequencing','Methylation binding domain sequencing','Methylation profiling by high-throughput sequencing','Genomic variant calling','Chromatin accessibility profiling by high-throughput sequencing','Histone modification profiling by high-throughput sequencing','Chromatin immunoprecipitation sequencing','Whole genome shotgun sequencing','Whole transcriptome sequencing','Targeted mutation analysis']", 'null']

platform

The specific technology or infrastructure used to perform the assay. If the omics platform used to create your dataset is not listed, please select other, a member of the gateway team will contact you to add an appropriate term(s) both to your record and to the metadata schema on your behalf.

title	guidance	is_list	required	type
Omics Platform	The specific technology or infrastructure used to perform the assay. If the omics platform used to create your dataset is not listed, please select other, a member of the gateway team will contact you to add an appropriate term(s) both to your record and to the metadata schema on your behalf.	False	False	["Platform['Other','NMR Nightingale','Metabolon','Biocrates','Illumina','Oxford Nanopore','454','Hi-C','HiFi']", 'null']