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Health Data Connect Entry
wdt_ID
wdt_created_by
wdt_created_at
wdt_last_edited_by
wdt_last_edited_at
Item ID
Field
Information
4387
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Name
Cohort Discovery Service
4388
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Name
Health Data Research Gatweay
4389
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Name
Safe People Registry
4390
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Name
Codelist Comparison Tool
4391
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Name
UK Clinical Cohorts Platform (CliC TRE)
4392
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Name
Five Safes Data Access Template
4393
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Name
HDR UK Futures Training Platform
4394
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Name
Data Access Agreement (DAA) Template
4395
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Name
SafeGUARDS Framework
4396
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Name
PEDRI Good Practice Standards
4397
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Name
OMOP Real-World Evidence Network (UK)/HERON-UK
4398
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Name
PEDRI Resource Hub
4399
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Name
Data Utility Comparison Studies (DUCkS) Framework for Clinical Trials Using Healthcare Systems Data
4400
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Description
A federated, privacy-preserving querying service that enables researchers to assess cohort feasibility and availability across multiple data custodians without any patient-level data leaving the source environment. Built on the OMOP Common Data Model and integrated into the Health Data Research Gateway, the Cohort Discovery Service helps researchers identify suitable datasets before making formal data-access requests.
4401
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Description
The Gateway streamlines the end-to-end user journey to search, discover and request access to the wealth of health and associated Datasets, Analysis Scripts & Software, Publications and Research Projects from across the UK and beyond.
4402
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Description
A platform to streamline 'safe people' decision-making for granting access to sensitive data.
4403
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Description
A tool designed to support the comparison, refinement and curation of project-specific codelists by integrating external libraries, including the HDR UK Phenotype Library and OpenCodelists, with user-generated datasets to improve research workflows and coding accuracy.
4404
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Description
A secure Trusted Research Environment developed by HDR UK, SAIL Databank and UK SeRP to support storage, linkage and secure remote access to UK cohort datasets and NHS data, enabling more efficient and scalable cohort research.
4405
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Description
A harmonised template for data-access requests aligned to the Five Safes Framework, supporting more consistent and streamlined governance processes.
4406
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Description
An online learning platform providing training and professional development in health data science, governance and secure research practices.
4407
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Description
A practical framework providing principles, guidance and good practice to support trustworthy information governance and responsible data use.
4408
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Description
A practical framework providing principles, guidance and good practice to support trustworthy information governance and responsible data use.
4409
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Description
A national framework setting out good practice standards for involving patients and the public in data-intensive research and innovation activities.
4410
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Description
A UK-wide network using the OMOP common data model to support federated analytics, multi-site studies and scalable real-world evidence research.
4411
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Description
A curated collection of resources, tools and examples supporting effective patient and public involvement in data-intensive research.
4412
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Description
A methodological framework for assessing whether routinely collected healthcare data are sufficiently complete and reliable for use in clinical trial follow-up and outcome assessment.
4413
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Adoption Pack Link
Adoption pack
4414
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Adoption Pack Link
Adoption pack
4415
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Adoption Pack Link
Adoption pack
4416
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Adoption Pack Link
Adoption pack
4417
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Adoption Pack Link
Adoption pack
4418
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Adoption Pack Link
Adoption pack
4419
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Adoption Pack Link
Adoption pack
4420
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Adoption Pack Link
Adoption pack
4421
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Adoption Pack Link
Adoption pack
4422
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Adoption Pack Link
Adoption pack
4423
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Adoption Pack Link
Adoption pack
4424
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Adoption Pack Link
Adoption pack
4425
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Adoption Pack Link
Adoption pack
4426
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Contact team/person
Sangya Pundir
4427
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Contact team/person
Melissa Konopko
4428
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Contact team/person
Wendi Bacon
4429
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Contact team/person
BHF DSC
4430
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Contact team/person
BHF DSC
4431
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Contact team/person
Information Governance
4432
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Contact team/person
Capacity Building
4433
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Contact team/person
Information Governance
4434
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Contact team/person
Trust and Transparency
4435
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Contact team/person
PEDRI
4436
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Contact team/person
Alex Knight
4437
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Contact team/person
Anna Woolman
4438
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Contact team/person
Macey Murray
4439
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Categories
Service
4440
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Categories
Service
4441
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Categories
Service
4442
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Categories
Product
4443
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Categories
Product
4444
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Categories
Template
4445
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Categories
Training
Product
4446
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Categories
Template
4447
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Categories
Framework
4448
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Categories
Framework
4449
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Categories
Service
4450
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Categories
Template
Standard
Pathway
Guidance
4451
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Categories
Framework
4452
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Primary Purpose
Discovery or navigation, data linkage
4453
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Primary Purpose
Discovery or navigation, data access enablement, data linkage
4454
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Primary Purpose
Governance or assurance, data access
4455
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Primary Purpose
Analytics or modelling, Discovery or navigation
4456
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Primary Purpose
Secure data access and linkage, Research infrastructure
4457
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Primary Purpose
Governance or assurance
4458
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Primary Purpose
Training or workforce development
4459
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Primary Purpose
Governance or assurance, Trust and transparency
4460
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Primary Purpose
Trust and transparency, Public involvement
4461
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Primary Purpose
Analytics or modelling, Federated research delivery
4462
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Primary Purpose
Guidance and support for public involvement
4463
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Primary Purpose
Discovery or navigation, Metadata access
4464
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Primary Purpose
Discovery or navigation, Governance or assurance
4465
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Intended users
Data custodians, SDE/TRE teams, Researchers, Clinical trial planners
4466
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Intended users
Researchers, NHS teams, Industry, Funders, SDE/TRE teams, Data custodians
4467
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Intended users
Data custodians, SDE/TRE teams, Researchers, Host Organisations
4468
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Intended users
Researchers, Analysts, SDE/TRE teams
4469
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Intended users
Researchers, Cohort custodians, SDE/TRE teams, Funders
4470
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Intended users
Data custodians, SDE/TRE teams, Researchers
4471
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Intended users
Researchers, NHS teams, Data custodians, Students
4472
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Intended users
Data custodians, NHS teams, Researchers, Funders
4473
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Intended users
Researchers, Public involvement teams, Funders
4474
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Intended users
Researchers, Data custodians, SDE/TRE teams, Industry
4475
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Intended users
Researchers, Public involvement teams, NHS teams
4476
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Intended users
Researchers, Industry, NHS teams, Funders
4477
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Intended users
Data custodians, SDE/TRE teams, Researchers
4478
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Primary Contact Route
URL
4479
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Primary Contact Route
URL
4480
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Primary Contact Route
Email
4481
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Primary Contact Route
URL
4482
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Primary Contact Route
URL
4483
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Primary Contact Route
URL
4484
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Primary Contact Route
URL
4485
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Primary Contact Route
URL
4486
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Primary Contact Route
URL
4487
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Primary Contact Route
URL
4488
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Primary Contact Route
URL
4489
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Primary Contact Route
URL
4490
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Primary Contact Route
URL
4491
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Primary Contact Detail
https://hdruk.atlassian.net/servicedesk/customer/portal/7/group/14/create/243
4492
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Primary Contact Detail
https://hdruk.atlassian.net/servicedesk/customer/portal/7/group/82/create/78
4493
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Primary Contact Detail
enquiries@safepeopleregistry.org
4494
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Primary Contact Detail
https://bhfdatasciencecentre.org
4495
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Primary Contact Detail
https://bhfdatasciencecentre.org/areas/uk-clic-homepage/
4496
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Primary Contact Detail
https://www.hdruk.ac.uk/access-to-health-data/uk-health-data-research-alliance/
4497
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Primary Contact Detail
https://hdruklearn.org/
4498
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Primary Contact Detail
https://www.hdruk.ac.uk/access-to-health-data/
4499
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Primary Contact Detail
https://www.hdruk.ac.uk/about-us/what-is-health-data-research/your-questions-answered/
4500
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Primary Contact Detail
https://www.pedri.org.uk/
4501
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Primary Contact Detail
https://heron-uk.github.io/heron-uk/
4502
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Primary Contact Detail
https://www.pedri.org.uk/resources/
4503
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Primary Contact Detail
https://www.sciencedirect.com/science/article/pii/S1551714424000971
4504
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Originator Type
4505
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Originator Type
4506
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Originator Type
4507
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Originator Type
4508
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Originator Type
4509
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Originator Type
4510
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Originator Type
4511
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Originator Type
4512
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Originator Type
4513
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Originator Type
PEDRI
4514
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Originator Type
4515
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Originator Type
PEDRI
4516
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Originator Type
Academic Institute
4517
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Link
https://healthdatagateway.org/en/about/cohort-discovery
4518
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Link
https://healthdatagateway.org/en
4519
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Link
https://safepeopleregistry.org/en
4520
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Link
https://bhfdsc.github.io/documentation/docs/resources/codelist_comparison_tool
4521
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Link
https://bhfdatasciencecentre.org/areas/enhancing-cohorts/
4522
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Link
https://zenodo.org/records/5946892
4523
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Link
https://www.hdruk.ac.uk/study-and-train/learn-with-hdr-uk-futures/
4524
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Link
https://ukhealthdata.org/trust-and-transparency/data-access-and-governance/data-access-agreement-template/
4525
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Link
https://ukhealthdata.org/trust-and-transparency/data-access-and-governance/safeguards/
4526
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Link
https://www.pedri.org.uk/wp-content/uploads/2025/01/PEDRI-Good-Practice-Standards-v4.pdf
4527
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Link
https://heron-uk.github.io/heron-uk/
4528
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Link
https://www.pedri.org.uk/resources-hub/tools-and-guidance/
4529
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Link
https://www.sciencedirect.com/science/article/pii/S1551714424000971
https://www.ucl.ac.uk/population-health-sciences/clinical-trials-and-methodology/study/short-courses/using-healthcare-systems-data-clinical-trials-data-utility-comparisons-ducks-workshop
https://www.innovative-ctu.ucl.ac.uk/news/news-stories/2024/may/why-clinical-trials-need-data-utility-comparisons-of-healthcare-systems-data/
4530
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Originator Orgs
HDR UK
4531
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Originator Orgs
HDR UK
4532
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Originator Orgs
HDR UK
4533
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Originator Orgs
BHF Data Science Centre
4534
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Originator Orgs
BHF Data Science Centre
4535
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Originator Orgs
UKHDRA, SAIL, ONS
4536
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Originator Orgs
HDR UK
4537
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Originator Orgs
UKHDRA
4538
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Originator Orgs
UKHDRA, HDR UK
4539
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Originator Orgs
PEDRI, HDR UK
4540
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Originator Orgs
HDR UK, Oxford, GOSH, Barts, UCLH, LTHT, LTH, DataLoch, CPRD
4541
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Originator Orgs
HDR UK
4542
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Originator Orgs
University College London
4543
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Context of use
Used during study design and feasibility assessment to identify relevant cohort counts and assess dataset suitability without exposing identifiable data.
4544
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Context of use
Used by researchers, analysts and organisations to discover UK health datasets, research resources, tools and services through a national metadata catalogue.
4545
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Context of use
Researchers/innovators make profiles, Organisations make profiles and affiliate those individuals, and Data Custodians use those profiles and affiliations to make decisions about whether individuals are deemed 'safe people' to access sensitive data for their project.
4546
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Context of use
Used within health data research projects requiring harmonisation, refinement or validation of clinical codelists across multiple datasets and coding frameworks.
4547
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Context of use
Designed to support UK cohort studies requiring secure storage, linkage and remote access to cohort and NHS datasets within a Trusted Research Environment.
4548
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Context of use
Used by organisations and data custodians to support standardised data-access request processes aligned to the Five Safes Framework.
4549
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Context of use
Used by researchers, analysts and health data professionals for training and professional development in health data science and governance.
4550
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Context of use
Used to support consistent legal and governance arrangements for data access across TREs, SDEs and research collaborations.
4551
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Context of use
Applied within organisations and programmes seeking to strengthen trustworthy governance, transparency and responsible use of health data.
4552
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Context of use
Used to support the planning, delivery and evaluation of patient and public involvement activities in data-intensive research programmes
4553
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Context of use
Used across multi-site and federated real-world evidence studies requiring standardised analytics using the OMOP common data model.
4554
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Context of use
Used by researchers and public involvement teams to access practical resources, guidance and examples for patient and public involvement activities.
4555
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Context of use
Used within randomised controlled trials, pragmatic trials and registry-enabled trials where healthcare systems data may support participant follow-up, outcome ascertainment or endpoint validation. Applicable to NHS datasets, disease registries, electronic health records and administrative healthcare datasets linked to trial participants.
4556
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Readiness tier
Established
4557
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Readiness tier
Established
4558
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Readiness tier
Established
4559
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Readiness tier
Emerging
4560
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Readiness tier
Exploratory
4561
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Readiness tier
Established
4562
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Readiness tier
Established
4563
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Readiness tier
Established
4564
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Readiness tier
Emerging
4565
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Readiness tier
Emerging
4566
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Readiness tier
Emerging
4567
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Readiness tier
Emerging
4568
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Readiness tier
Emerging
4569
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
DOI Link
https://doi.org/10.1016/j.cct.2024.107642
4570
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Maturity - TFS
Productisation
4571
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Maturity - TFS
Growth
4572
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Maturity - TFS
Productisation
4573
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Maturity - TFS
Productisation
4574
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Maturity - TFS
Prototype
4575
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Maturity - TFS
Productisation
4576
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Maturity - TFS
Growth
4577
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Maturity - TFS
Productisation
4578
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Maturity - TFS
Growth
4579
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Maturity - TFS
Growth
4580
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Maturity - TFS
Growth
4581
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Maturity - TFS
Growth
4582
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Maturity - TFS
Pilot
4583
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Primary Use Case
Researcher or clinical trial planning feasibility assessment across multiple datasets before submitting a data access request.
Multi-custodian study design using aggregate cohort counts without exposing patient-level data.
Identification of suitable datasets and custodians for a planned research study.
4584
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Primary Use Case
Supports discovery of UK health datasets, research resources and tools through a national metadata catalogue.
Enables researchers and organisations to identify relevant datasets and services for research planning.
Improves visibility and accessibility of UK health data assets across organisations.
4585
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Primary Use Case
Enables researchers and their organisations to provide 'safe people' credentials once, in a Safe People Registry profile, rather than repeatedly via many avenues for each project and custodian they work with.
Enables Custodians to be automatically notified when any of their users leave an organisation, prompting the custodian to remove access from those individuals.
Enables Custodians to scale user validation, through reusable, customisable checklists, automated flags, and automated audit logs.
4586
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Primary Use Case
Supports comparison of codelists to identify overlap, missing codes and inconsistencies.
Supports mapping of codes to descriptions, GDPPR refsets and prevalence within NHS England SDE data.
Enables users to build, refine and export project-specific codelists for research pipelines.
4587
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Primary Use Case
Enables secure access to anonymised linked cohort and NHS data for approved researchers.
Supports secure linkage and management of cohort datasets within a TRE environment.
Facilitates multi-institutional collaboration and scalable cohort research.
4588
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Primary Use Case
Enables consistent, efficient data-access applications across custodians.
Supports harmonisation of governance documentation and review processes.
Reduces duplication in data-access application preparation.
4589
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Primary Use Case
Supports national data science skills development.
Provides accessible online learning for health data science and governance.
Supports workforce development across research and NHS communities.
4590
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Primary Use Case
Streamlines data-sharing approvals and reduces duplication.
Supports more consistent governance and legal arrangements across organisations.
Simplifies preparation of data-access documentation for research collaborations.
4591
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Primary Use Case
Provides a common framework for custodians and TRE operators.
Supports trustworthy governance and responsible use of health data.
Encourages transparency and consistency across organisations.
4592
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Primary Use Case
Adopted by universities and TRE operators to standardise PPIE practice.
Supports meaningful and consistent patient and public involvement activities.
Provides a shared reference point for good practice in data-intensive research.
4593
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Primary Use Case
Supports federated analysis across institutions.
Enables use of the OMOP common data model for multi-site studies.
Supports scalable real-world evidence generation and reusable analytics.
4594
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Primary Use Case
Could become the main point of reference for advice on good practice for PPIE activities.
Provides practical resources, guidance and examples for researchers and public involvement teams.
Supports organisations developing or improving PPIE approaches in data-intensive research.
4595
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Primary Use Case
Can be used within clinical trials to compare routinely collected healthcare data against trial-adjudicated outcomes and assess suitability for trial follow-up.
Can support development of data-enabled and registry-enabled trials by identifying which outcomes can be reliably captured using healthcare systems data.
Can inform regulators, sponsors and funders on the appropriate use of healthcare systems data within clinical trials and long-term follow-up studies.
4596
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Intended outcomes
Improved study planning efficiency and reduction in unsuccessful or premature data access requests.
4597
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Intended outcomes
Reduced duplication, improved discoverability and more efficient research collaboration.
4598
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Intended outcomes
Less time spent on the administration of 'safe people' validations, and with higher security and assurance of said validations.
4599
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Intended outcomes
Improved consistency, transparency and efficiency of phenotype and codelist development.
4600
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Intended outcomes
Faster and more efficient cohort research with reduced duplication in linkage and access processes.
4601
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Intended outcomes
More streamlined and transparent governance and application processes.
4602
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Intended outcomes
Increased capability and confidence in using health data securely and effectively.
4603
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Intended outcomes
Faster and more consistent setup of data-access arrangements.
4604
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Intended outcomes
Improved public trust and more consistent governance practices.
4605
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Intended outcomes
Improved quality, consistency and credibility of PPIE activities.
4606
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Intended outcomes
Improved interoperability, scalability and consistency of analytical methods.
4607
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Intended outcomes
Greater visibility, consistency and accessibility of PPIE good practice resources.
4608
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Intended outcomes
Improved efficiency of clinical trial delivery through reduced duplication of data collection and greater use of routinely collected healthcare data where appropriate. Supports evidence-based adoption of data-enabled trial methods and improved understanding of the strengths and limitations of healthcare systems data for different outcome types.
4609
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
What it is not
Not a data access platform. Does not provide or expose identifiable or patient-level data.
4610
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
What it is not
Not a repository for downloadable identifiable data.
4611
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
What it is not
Does not provide data access to researchers.
4612
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
What it is not
Not a definitive clinical coding authority or substitute for clinical validation and project-specific review.
4613
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
What it is not
Not an open-access platform or replacement for local governance and cohort-specific approvals.
4614
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
What it is not
Not a replacement for local governance review or legal approval processes.
4615
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
What it is not
Not a formal academic qualification or accreditation framework.
4616
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
What it is not
Not a substitute for legal advice or organisation-specific governance review.
4617
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
What it is not
Not a regulatory standard or mandatory compliance framework.
4618
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
What it is not
Not a replacement for local engagement strategies or public consultation requirements.
4619
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
What it is not
Not a centralised national dataset or replacement for local data governance controls.
4620
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
What it is not
Not a formal accreditation scheme or regulatory requirement.
4621
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
What it is not
This is not a replacement for randomised controlled trials or a validation that healthcare systems data are suitable for all trial purposes. The framework does not remove the need for endpoint adjudication, governance approvals or trial-specific assessment of data quality and completeness.
4622
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
No's Adopting
14
4623
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
No's Adopting
100000
4624
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
No's Adopting
20
4625
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
No's Adopting
50
4626
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
No's Adopting
4
4627
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
No's Adopting
10
4628
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
No's Adopting
65000
4629
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
No's Adopting
8
4630
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
No's Adopting
12
4631
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
No's Adopting
30
4632
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
No's Adopting
7
4633
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
No's Adopting
10000
4634
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
No's Adopting
3
4635
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Adoption Examples/Evidence of Use
Used nationally by data custodians across all four UK nations to support researcher and clinical trialist feasibility queries, including primary care data via CPRD, Scottish population-level data via Public Health Scotland, and rolling out across the NHS SDE England network.
4636
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Adoption Examples/Evidence of Use
Used nationally by researchers, NHS organisations, industry and funders to discover datasets and research resources across the UK health data ecosystem.
4637
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Adoption Examples/Evidence of Use
Four Custodians have gone live, 10 more are on our pre-production system. This does not count the Organisations and researchers associated with projects at those Custodians.
4638
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Adoption Examples/Evidence of Use
Used within CVD-COVID-UK/COVID-IMPACT activities and NHS England SDE research workflows to support codelist development and validation.
4639
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Adoption Examples/Evidence of Use
https://nurturebiobank.org/information-for-researchers/
4640
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Adoption Examples/Evidence of Use
SAIL Databank, NHSA TRE, wider governance and TRE application workflows.
4641
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Adoption Examples/Evidence of Use
NHS organisations, universities, HDR UK training and professional development activities.
4642
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Adoption Examples/Evidence of Use
NHS Digital TRE, GPDPR Safe Haven and associated governance workflows.
4643
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Adoption Examples/Evidence of Use
Alliance partners and organisations developing governance and transparency approaches for TRE operations.
4644
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Adoption Examples/Evidence of Use
University of Bristol, SAIL Databank public panel activities and wider PPIE practice development.
4645
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Adoption Examples/Evidence of Use
Oxford, UCL, Imperial and wider OMOP/real-world evidence collaboration activities.
4646
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Adoption Examples/Evidence of Use
Referenced within PEDRI engagement and public involvement activities across UK data-intensive research programmes
4647
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Adoption Examples/Evidence of Use
The framework builds on published comparison studies between trial-adjudicated datasets and routinely collected healthcare data, including:
Harper et al. (2021): comparison of serious vascular events in ASCEND.
Harper et al. (2023): comparison of major bleeding events using UK routine data.
Macnair et al. (2023): comparison of cardiovascular trial data with healthcare systems data.
The methodology has also informed workshops and methodological activities within UK clinical trials infrastructure.
4648
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Reg Users / Access No's 2025
Not publicly reported
4649
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Reg Users / Access No's 2025
50000
4650
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Reg Users / Access No's 2025
Not publicly reported
4651
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Reg Users / Access No's 2025
>100
4652
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Reg Users / Access No's 2025
~30
4653
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Reg Users / Access No's 2025
Not formally tracked
4654
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Reg Users / Access No's 2025
65000
4655
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Reg Users / Access No's 2025
Not publicly reported
4656
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Reg Users / Access No's 2025
Not publicly reported
4657
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Reg Users / Access No's 2025
Not formally tracked
4658
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Reg Users / Access No's 2025
Not publicly reported
4659
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Reg Users / Access No's 2025
Not formally tracked
4660
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Reg Users / Access No's 2025
Not formally tracked
4661
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Preconditions
Data custodians require standardised OMOP-mapped data, with a Gateway metadata page (can be processed as part of the onboarding workflow).
4662
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Preconditions
Availability of dataset metadata and participation from contributing organisations.
4663
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Preconditions
Custodians must use the Safe People Registry for it to be valuable to researchers and their organisations.
4664
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Preconditions
Access to relevant coding systems, codelists and approved datasets.
4665
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Preconditions
Accredited researcher access, governance approvals and cohort participation agreements.
4666
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Preconditions
Agreement between participating custodians on governance approach and application processes.
4667
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Preconditions
Access to online learning infrastructure and maintained training content.
4668
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Preconditions
Participating organisations willing to align around common governance approaches.
4669
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Preconditions
Organisational commitment to transparent and trustworthy governance practices.
4670
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Preconditions
Organisational commitment to patient and public involvement activities.
4671
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Preconditions
Availability of OMOP-mapped datasets and participating analytical sites.
4672
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Preconditions
Availability of maintained and curated public involvement resources.
4673
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Preconditions
Access to linked healthcare systems datasets and clinical trial datasets; information governance approvals; secure data linkage capability; and expertise in clinical coding systems and trial methodology.
4674
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Constraints
Discovery and feasibility outputs dependent on metadata quality and dataset coverage.
4675
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Constraints
Metadata completeness and quality may vary between contributors and over time.
4676
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Constraints
UK Data Custodians only
4677
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Constraints
Quality dependent on completeness and consistency of source codelists and coding standards.
4678
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Constraints
Restricted to approved users operating within secure TRE controls and linkage permissions.
4679
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Constraints
Local governance or legal variations may still require additional amendments.
4680
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Constraints
User engagement and impact dependent on uptake and ongoing content relevance.
4681
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Constraints
May require local legal modification or supplementary agreements.
4682
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Constraints
Adoption and implementation may vary between organisations and TREs.
4683
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Constraints
Effective implementation dependent on resources, training and sustained engagement.
4684
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Constraints
Variable maturity and consistency of OMOP implementation across organisations.
4685
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Constraints
Long-term value dependent on regular updating and community engagement.
4686
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Constraints
Performance varies depending on the outcome type, coding quality, completeness and timeliness of healthcare systems data. Some outcomes may require additional adjudication or supplementary trial data collection.
4687
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Dependencies
Gateway metadata catalogues, Bunny/BC|Insight query tools, OMOP-mapped data, SDE to host data collections.
4688
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Dependencies
Contributing data custodians, metadata standards, catalogue infrastructure and ongoing data stewardship.
4689
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Dependencies
Organisation onboarding makes it a lot easier for Custodians and researchers.
4690
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Dependencies
External codelist libraries, coding ontologies and secure access to NHS England SDE data.
4691
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Dependencies
SAIL Databank infrastructure, cohort datasets, NHS linkage pathways and TRE governance frameworks.
4692
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Dependencies
Organisational governance teams, Five Safes Framework principles and data-access review processes.
4693
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Dependencies
Subject matter experts, digital learning platforms and training providers.
4694
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Dependencies
Legal teams, governance processes and organisational approval mechanisms.
4695
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Dependencies
Governance expertise, public trust activities and alignment with existing governance frameworks.
4696
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Dependencies
PPIE expertise, public contributors and institutional support for involvement activities.
4697
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Dependencies
OMOP common data model, federated analytics infrastructure and participating institutions.
4698
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Dependencies
PEDRI network, contributor organisations and hosting infrastructure.
4699
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Dependencies
Dependent on access to NHS datasets, disease registries or electronic health records; secure linkage infrastructure; standardised coding systems such as ICD-10 and SNOMED CT; and appropriate governance arrangements.
4700
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Cost / commercial model
Free
4701
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Cost / commercial model
Free
4702
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Cost / commercial model
Free
4703
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Cost / commercial model
Free
4704
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Cost / commercial model
Cost recovery
4705
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Cost / commercial model
Free
4706
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Cost / commercial model
Free
4707
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Cost / commercial model
Free
4708
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Cost / commercial model
Free
4709
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Cost / commercial model
Free
4710
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Cost / commercial model
Cost recovery
4711
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Cost / commercial model
Free
4712
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Cost / commercial model
Free
4713
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Cost / commercial model details
Research-funded; no commercial model defined
4714
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Cost / commercial model details
Research-funded; no commercial model defined
4715
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Cost / commercial model details
Research-funded; no commercial model defined
4716
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Cost / commercial model details
Research-funded; no commercial model defined
4717
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Cost / commercial model details
Via negotiation
4718
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Cost / commercial model details
Research-funded; no commercial model defined
4719
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Cost / commercial model details
Research-funded; no commercial model defined
4720
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Cost / commercial model details
Research-funded; no commercial model defined
4721
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Cost / commercial model details
Research-funded; no commercial model defined
4722
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Cost / commercial model details
Research-funded; no commercial model defined
4723
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Cost / commercial model details
Via negotiation
4724
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Cost / commercial model details
Research-funded; no commercial model defined
4725
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Cost / commercial model details
Developed through publicly funded academic and clinical trials methodology research programmes. The framework is described in openly available peer-reviewed publications and is not subject to a commercial licensing model.
4726
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
License
Open Source
4727
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
License
Open Source
4728
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
License
Open Source
4729
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
License
Not Applicable
4730
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
License
Not Applicable
4731
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
License
Open Source
4732
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
License
CC-BY
4733
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
License
CC-BY
4734
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
License
CC-BY
4735
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
License
CC-BY
4736
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
License
Not Applicable
4737
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
License
Open Source
4738
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
License
Custom Terms
4739
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Support level
Supported service
4740
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Support level
Supported service
4741
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Support level
Supported service
4742
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Support level
Light-touch
4743
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Support level
Supported service
4744
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Support level
Supported service
4745
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Support level
Light-touch
4746
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Support level
Supported service
4747
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Support level
Light-touch
4748
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Engagement pathway
Register for a Gateway account, request access to Cohort Discovery and build your queries,
Deploy the open-source Cohort Discovery Service within your own system or environment.
Contact HDR UK to explore coming on board with the Cohort Discovery Service as a data custodian.
4749
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Engagement pathway
Search or browse metadata catalogue
Dataset or resource discovery using filters and search tools
Optional contact with dataset custodians through listed routes
Integration with wider HDR UK discovery and access pathways
4750
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Engagement pathway
Register to make an Organisation account, or be invited by a Data Custodian or researcher.
Register to make a Researcher account, or be invited by an Organisation or Data Custodian.
Contact HDR UK to be granted a Custodian account
4751
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Engagement pathway
Initial enquiry outlining research use case and coding requirements
Introductory discussion to confirm dataset compatibility and coding scope
Share demonstration materials or example workflow outputs
Optional discussion on integration into local research pipelines
4752
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Engagement pathway
Initial researcher or cohort enquiry
Governance and feasibility discussion with platform team
Support access and onboarding through approved TRE processes
Ongoing support through cohort/TRE governance routes
4753
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Engagement pathway
Request template and supporting guidance
Introductory governance discussion if required
Adapt template to local governance workflow
Optional feedback and iteration process
4754
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Engagement pathway
Access online training catalogue
Register for relevant learning modules or pathways
Participate in webinars, workshops or training sessions
Optional certification or CPD-linked activities where available
4755
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Engagement pathway
Request access to template documentation
Introductory governance or legal discussion
Local adaptation and review process
Optional sharing of implementation learning between organisations
4756
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Engagement pathway
Initial enquiry regarding governance or transparency approach
Workshop or discussion to explore applicability
Share framework materials and implementation guidance
Optional peer-learning or community discussion sessions
4757
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Engagement pathway
Initial enquiry regarding PPIE standards or adoption
Introductory discussion on organisational needs and maturity
Share standards documentation and implementation guidance
Optional peer-learning or case study discussion
4758
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Engagement pathway
Initial enquiry regarding OMOP or federated study opportunities
Technical and methodological scoping discussion
Potential collaboration discussion across participating sites
Optional exploration of multi-site analytics or study participation
4759
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Engagement pathway
Access public resource repository
Identify relevant tools, guidance or case studies
Optional contact with PEDRI network contributors
Optional participation in wider PEDRI activities or events
4760
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Engagement pathway
Initial methodological enquiry outlining trial context and proposed use of healthcare systems data
Scoping discussion to confirm suitability and available comparator datasets
Share methodological guidance, published examples and comparison approaches
Optional collaboration or advisory discussion with research partners
4761
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Response expectations
Public platform with near-instant query response. Quick response times for access requests within days.
4762
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Response expectations
Public platform available continuously; response times dependent on dataset custodians
4763
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Response expectations
Public platform available continuously; response times dependent on Data Custodians
4764
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Response expectations
5–10 working days depending on capacity
4765
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Response expectations
Subject to cohort approvals and TRE onboarding timelines
4766
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Response expectations
Typically shared within 5 working days
4767
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Response expectations
Immediate access for public content; scheduled delivery for facilitated sessions
4768
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Response expectations
Typically shared within 5–10 working days
4769
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Response expectations
Subject to team availability and programme priorities
4770
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Response expectations
Typically acknowledged within 5 working days
4771
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Response expectations
Timelines dependent on participating sites and study scope
4772
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Response expectations
Public resources available immediately
4773
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Response expectations
10–15 working days subject to research capacity
4774
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Ownership boundary
Service supports feasibility and discovery only; does not provide direct data access or act as data controller.
4775
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Ownership boundary
Gateway provides access to submitted metadata discovery and routing only; does not provide direct access to identifiable datasets or approve applications.
4776
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Ownership boundary
Registry surfaces information, does not confirm or check whether credentials are valid nor make decisions for Data Custodians.
4777
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Ownership boundary
Owner provides guidance and demonstration support; does not undertake bespoke codelist development or guarantee coding completeness.
4778
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Ownership boundary
Platform supports secure access infrastructure; does not override cohort governance or data-controller approvals.
4779
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Ownership boundary
Template provided as supporting resource only; local organisations retain responsibility for governance and approval decisions.
4780
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Ownership boundary
Platform provides training resources and coordination; does not guarantee competency, accreditation or workforce placement.
4781
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Ownership boundary
Template owner provides example materials only; local legal responsibility remains with participating organisations.
4782
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Ownership boundary
Framework provides guidance and good practice; does not constitute regulatory or legal advice.
4783
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Ownership boundary
Standards support good practice approaches but do not provide formal accreditation or compliance assurance.
4784
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Ownership boundary
Network facilitates collaboration and methodological alignment; participating organisations retain local governance and analytical responsibility.
4785
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Ownership boundary
Hub provides shared resources and examples; does not provide bespoke consultancy or organisational sign-off.
4786
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Ownership boundary
Framework provides methodological support and shared learning; does not provide trial delivery, regulatory approval or endpoint adjudication services.
4787
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571421
Related or alternative capability
4788
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571422
Related or alternative capability
4789
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2985571442
Related or alternative capability
notifications for all users of the system (Researchers, Organisations, Custodians) to keep apprised of status changes or training/security expirations. Automated notifications for all users of the system (Researchers, Organisations, Custodians) to keep apprised of status changes or training/security expirations. - https://Automated
4790
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992723
Related or alternative capability
4791
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987020
Related or alternative capability
4792
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987022
Related or alternative capability
4793
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924988403
Related or alternative capability
4794
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924986633
Related or alternative capability
4795
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992320
Related or alternative capability
4796
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924985286
Related or alternative capability
4797
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924987811
Related or alternative capability
4798
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924993921
Related or alternative capability
4799
Alex Knight
03/07/2026 05:15 PM
Alex Knight
03/07/2026 05:15 PM
2924992725
Related or alternative capability
Item ID
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