Version 1.1

required

Required metadata needed for the GWDM

gatewayId

Associated identifier (number) that is the BigInt key in our SQL database for the dataset version associated with this metadata

title	guidance	is_list	required	type
Gateway Identifier		False	True	['str']

gatewayPid

A unique persistent identifier for the metadata version. This is a 128-bit unique identifiers, as 32 hexadecimal digits separated by hyphens

title	guidance	is_list	required	type
Gateway Persistent Identifier		False	True	['str']

issued

Datetime stamp of when this metadata version was initially issued

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

modified

Datetime stamp of when this metadata was last modified

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

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	['str']

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	True	["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"]

Examples:

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

version

Dataset metadata version

title	guidance	is_list	required	type
Dataset Version		False	True	['str']

Examples:

• 1.1.0

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	["TwoHundredFiftyFiveCharacters[{'maxLength': 255, 'minLength': 2, 'type': 'string'}]"]

Examples:

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

shortTitle

A shorter descriptive title of the dataset

title	guidance	is_list	required	type
Short Title		False	True	["ShortTitle[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• ONS 2011 Census Wales (CENW)

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	True	["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• 10.1093/ije/dyx196

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	["LongAbstractText[{'anyOf': [{'maxLength': 5000, '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.

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.	False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

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

controlledKeywords

Keywords that have been filtered and limited

title	guidance	is_list	required	type
Controlled Keywords		False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

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	['EmailStr', 'null']

Examples:

• SAILDatabank@swansea.ac.uk

datasetType

Placeholder for dataset type"

title	guidance	is_list	required	type
Dataset Type		False	True	["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

description

Longer description of the dataset in detail

title	guidance	is_list	required	type
Description		False	True	["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• Publications that mention HDR-UK (or any variant thereof) in Acknowledgements or Author Affiliations
  
  This will include:
  - Papers
  - COVID-19 Papers
  - COVID-19 Preprint

publisher

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

name

Name of the organisation

title	guidance	is_list	required	type
Organisation Name		False	True	['Name[{}]', 'null']

gatewayId

Identifier on the gateway

title	guidance	is_list	required	type
Organisation Gateway Identifier		False	False	['str', 'null']

rorId

The Research Organization Registry (ROR) for the organisation, if applicable

title	guidance	is_list	required	type
Research Organization Registry Identifier		False	False	['str', 'null']

populationSize

Summary population size of the cohort

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

datasetSubType

Placeholder for dataset sub-type

title	guidance	is_list	required	type
Dataset Sub-type		False	False	["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", '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	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

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

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	["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null']

followup

If known, what is the typical time span that a patient appears in the dataset (follow up period)

title	guidance	is_list	required	type
Followup		False	False	["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null']

typicalAgeRange

Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).

title	guidance	is_list	required	type
Age Range		False	False	["AgeRange[{'anyOf': [{'pattern': 'Not Known

Examples:

• 18-90

gender

Cohort description: Male, Female, Other

title	guidance	is_list	required	type
Gender		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

biologicalsamples

Cohort description: Blood, Saliva, Urine, Other

title	guidance	is_list	required	type
Biological Samples		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

psychological

Cohort description: Mental health, Cognitive function

title	guidance	is_list	required	type
Psychological		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

physical

Cohort description: Cardiovascular, Respiratory, Musculoskeletal, Hearing and Vision, Reproductive

title	guidance	is_list	required	type
Physical		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

anthropometric

Cohort description: Height, Weight, Waist circumference, Hip circumference, Blood pressure

title	guidance	is_list	required	type
Anthropometric		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

lifestyle

Cohort lifestyle habits: Smoking, Physical activity, Dietary habits, Alcohol

title	guidance	is_list	required	type
Lifestyle		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

socioeconomic

Cohort description: Occupation, Family circumstances, Housing, Education, Ethnic group, Marital status, Social support

title	guidance	is_list	required	type
Socio-economic		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', '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

None

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.	False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

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.	False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

collectionSituation

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

title	guidance	is_list	required	type
Collection Situation Setting		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

temporal

None

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', 'null']

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', 'null']

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	["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"]

accrualPeriodicity

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
Periodicity		False	True	["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"]

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']

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	False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

dataUseRequirement

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.	False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

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.

Examples:

• National Services Scotland

name

Name of the organisation

title	guidance	is_list	required	type
Organisation Name		False	True	['Name[{}]', 'null']

gatewayId

Identifier on the gateway

title	guidance	is_list	required	type
Organisation Gateway Identifier		False	False	['str', 'null']

rorId

The Research Organization Registry (ROR) for the organisation, if applicable

title	guidance	is_list	required	type
Research Organization Registry Identifier		False	False	['str', 'null']

access

This section includes information about data access.

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	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

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	["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", '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/	False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

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	True	["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.

vocabularyEncodingSchemes

Code value of the ontology vocabulary encoding

title	guidance	is_list	required	type
Controlled Vocabulary		False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• OPCS4,NHS NATIONAL CODES,ICD10,OTHER

conformsTo

What the vocabulary conforms to.

title	guidance	is_list	required	type
Conforms To	- 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/.	False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• LOCAL,NHS DATA DICTIONARY

languages

Language code(s) of the language of the dataset metadata and underlying data is made available.

title	guidance	is_list	required	type
Language Code(s)		False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• en

formats

Format(s) the dataset can be made available in

title	guidance	is_list	required	type
Dataset Format		False	True	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• CSV,JSON,SQL database table

linkage

Metadata for various linkages with datasets and other gateway entities

isGeneratedUsing

??

title	guidance	is_list	required	type
Is Generated Using		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

associatedMedia

Any media associated with the Gateway Organisation using a valid URI 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

title	guidance	is_list	required	type
Associated Media		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• https://popdatasci.swan.ac.uk/centres-of-excellence/sail/,https://www.youtube.com/watch?v=ZK9-Jw3uVkw,https://saildatabank.com/,https://saildatabank.com/about-us/

dataUses

??

title	guidance	is_list	required	type
Data Uses		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

isReferenceIn

The keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced.',

title	guidance	is_list	required	type
Is Reference in		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

tools

URL of any analysis tools or models that have been created for this dataset and are available for further use

title	guidance	is_list	required	type
Tools		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• https://conceptlibrary.saildatabank.com/

datasetLinkage

Dataset Linkage copied over from

isDerivedFrom

Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset

title	guidance	is_list	required	type
Derivations		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• Data will be minimised as appropriate relative to the data access application

isPartOf

If the dataset is part of a group or family

title	guidance	is_list	required	type
Is PartOf		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• UKCRC Tissue Directory and Coordination Centre

isMemberOf

Dataset is a member of XXX(?)

title	guidance	is_list	required	type
Is MemberOf		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

linkedDatasets

Links to other datasets.

title	guidance	is_list	required	type
Linked Datasets		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• Yes. To any SAIL dataset & reference data.,ALL

investigations

Please provide the keystone paper associated with the dataset.

title	guidance	is_list	required	type
Investigations		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

Examples:

• https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases

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	["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"]

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']

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']

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[{}]']

structuralMetadata

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

name

The name of a table in a dataset.

title	guidance	is_list	required	type
Table Name		False	True	['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 name of a column in a table.

title	guidance	is_list	required	type
Column Name		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']

tissuesSampleCollection

metedata for tissue samples

id

ID of the tissue sample collection

title	guidance	is_list	required	type
ID		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

dataCategories

The type of data that is associated with the samples in the study. Can be several values MIABIS-2.0-13

title	guidance	is_list	required	type
Data Categories		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

materialType

The biospecimen saved from a biological entity for propagation e.g. testing, diagnostics, treatment or research purposes. Can be several values MIABIS-2.0-14

title	guidance	is_list	required	type
Material Type		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

accessConditions

Access conditions for the tissue sample collection

title	guidance	is_list	required	type
Access Conditions		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

collectionType

The type of the sample collection. Can be several values MIABIS-2.0-16

title	guidance	is_list	required	type
Collection Type		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

disease

Disease associated with the tissue sample collection

title	guidance	is_list	required	type
Disease		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

storageTemperature

Storage temperature of the tissue sample collection

title	guidance	is_list	required	type
Storage Temperature		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

sampleAgeRange

Age range of the tissue sample collection

title	guidance	is_list	required	type
Sample Age Range		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

tissueSampleMetadata

Metadata related to the tissue sample

id

ID of the tissue sample metadata

title	guidance	is_list	required	type
Metadata ID		False	False	['str', 'null']

sampleDonor

Information about the sample donor

id

ID of the sample donor

title	guidance	is_list	required	type
Donor ID		False	False	['str', 'null']

sex

Sex of the sample donor

title	guidance	is_list	required	type
Donor Sex		False	False	['str', 'null']

birthDate

Date of birth of the sample donor

title	guidance	is_list	required	type
Donor birth date		False	False	['date', 'datetime', 'null']

dataCategories

Data categories related to the sample donor

title	guidance	is_list	required	type
Donor Data Categories		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

sampleType

Type of the tissue sample

title	guidance	is_list	required	type
Sample Type		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

storageTemperature

Storage temperature of the tissue sample

title	guidance	is_list	required	type
Storage Temperature		False	False	['str', 'null']

creationDate

Date when the tissue sample metadata was created

title	guidance	is_list	required	type
Creation Date		False	False	['date', 'datetime', 'null']

anatomicalSiteOntologyCode

Ontology code for the anatomical site, this code must match an ICD-0-3 format

title	guidance	is_list	required	type
Anatomical Site Ontology Code		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

anatomicalSiteOntologyDescription

Ontology description for the anatomical site

title	guidance	is_list	required	type
Anatomical Site Ontology Description		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

anatomicalSiteFreeText

Free text describing the anatomical site

title	guidance	is_list	required	type
Anatomical Site Free Text		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

sampleContentDiagnosis

Diagnosis related to the sample content

title	guidance	is_list	required	type
Sample Content Diagnosis		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']

useRestrictions

Restrictions on the use of the tissue sample

title	guidance	is_list	required	type
Use Restrictions		False	False	["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null']