Landscape of relevant Clinical and FAIR data resources
Resource, links, geography and purpose
Resource | Home link | Geography | Description of purpose | Date entry/update |
CDISC | Global | Working to amplify data's impact. CDISC creates clarity in clinical research by bringing together a global community of experts to develop and advance data standards of the highest quality. Together, we enable the accessibility, interoperability, and reusability of data for more meaningful and efficient research that has greater impact on global health. CDISC is a non-profit organisation. | 15th Apr 2021 | |
EHDEN | EU funding | On a mission to become the trusted open science community built for health data research via a European federated network. This public-private IMI project driven by OHDSI. | 15th Apr 2021 | |
FHIR4FAIR | https://confluence.hl7.org/pages/viewpage.action?pageId=91991234 | Global | Wiki for content to develop a HL7 FHIR Implementation guide - called FHIR4FAIR FHIR IG - providing guidance on how HL7 FHIR can be used for supporting FAIR health data implementation and assessment. This project is owned by HL7 (https://www.hl7.org/ ), which is a non-profit organisation. | 15th Apr 2021 |
HL7 FHIR |
| Global | FHIR is an interoperability standard intended to facilitate the exchange of healthcare information between healthcare providers, patients, caregivers, payers, researchers, and any one else involved in the healthcare ecosystem. The standard reference guide: . This standard is owned by HL7 ( ), which is a non-profit organisation. | 15th Apr 2021 |
i2b2 transSMART | US & EU | An Open-Source and Open-Data Community. Enabling collaboration for precision medicine, through sharing, integration, standardization, and analysis of heterogenous data from healthcare and research. i2b2 tranSMART is a non-profit organisation. | 15th Apr 2021 | |
PCORnet |
| US | National resource where health data, research expertise, and patient insights are available to deliver fast, trustworthy answers that advance health outcomes. This resource is owned and funded by PCORI ( ), a non-profit organisation. | 15th Apr 2021 |
OHDSI |
| Global | Obervational Heath Data Science and Informatics (OHDSI, pronounced "Odyssey") is a multi-stakeholder, interdisciplinary collaborative to bring out the value of health data through large-scale analytics. An international network of researchers and observational health databases with a central coordinating center housed at Columbia University. OHDSI is a on-profit organisation. | 15th Apr 2021 |
OpenEHR |
| Global | Technology for e-health, consisting of open specifications, clinical models and software that can be used to create standards, and build information and interoperability solutions for healthcare. OpenEHR is a non-profit organisation. | 15th Apr 2021 |
PhUSE |
| Global | Sharing ideas, tools and standards around data, statistical and reporting technologies to advance the future of life sciences. Industry voice to regulatory agencies and standards organisations such as the FDA, EMA & CDISC. PhUSE is a non-profit organisation. | 15th Apr 2021 |
TransCelerate BioPharma | US | To collaborate across the global biopharmaceutical research and development community to identify, prioritize, design and faciliate implementation of solutions designed to drive efficient , effective and high-quality delivery of new medicines. TransCelerate is a non-profit organisation. | 15th Apr 2021 |