About this catalog
COVID-19 Real World Data resources are critical to multiple initiatives. At Graticule we help our clients solve advanced real world data problems including accessing unstructured resources such as radiology, free text, genomics, and IoT sources not usually available from commercial resources. As a component of collaborations with many of the groups in the Real World Data ecosystem we have been collecting the initiatives for COVID-19 and seek to share that knowledge with the world in the hope that we can accelerate useful solutions. If you have a COVID-19 RWD resource or initiative that we did not list in this catalog please feel free to reach out to us at firstname.lastname@example.org.
Graticule – Engaging with multiple health systems and HIT platforms to support COVID-19 research
Graticule is enabling research across multiple sources to provide advanced data sets and a focus on unstructured data and information from near real time sources needed to go deeper and faster to meet urgent research requirements. Graticule is working with large health system partners with deep COVID-19 registries to source insights and data sets for complex questions such as vaccine trial modeling, drug repurposing, and synthetic controls. Graticule is also working with select HIT companies to offer unique data sets including remote monitoring of asymptomatic patients, radiology data, clinical trial recruitment, ED triage, and linking and distribution of deIdentified data through marketplaces.
MIDAC – Creation & enhancement of COVID-19 medical images & ancillary databases for research and development of newer AI applications
Medexprim is planning to launch Medical Imaging Data against Coronavirus (MIDAC) with an aim to create a centralized, collaborative and openly accessible Data lake of imaging exams and ancillary data of both COVID-19 affected patients & others. These datasets can be used for research as well as in development of newer AI applications. MIDAC’s project mission consists of multiple activities including overall project management, integration of solutions, software editions, and organizational & contractual framework. The project will provide support to mainly three groups of users including hospitals, annotators or validators and the data lake users.
RSNA – Open imaging data repository to support international COVID-19 research & education
Radiological Society of North America (RSNA) will launch COVID-19 imaging data repository to extend its support in international research and education efforts. The repository framework consists of image storage, annotation and analysis which in turn will help researchers to understand epidemiological trends and to generate new AI algorithms. These AI algorithms will help in COVID-19 disease detection, differentiation from pneumonia and quantification of lung involvement on CT for prognosis.
Aloha Health Networks – Clinical trial matching and recruitment through deep EHR integration
Aloha provides a clinical trial and RWD study recruitment solution for reaching COVID-19 patients using Natural Language Processing and partnerships with a network of health systems. The network of sites able to recruit patients into studies includes both multiple US locations and large health systems in Asia. Aloha is working to provide data curated from free text records within these sites for Real World Data research studies.
Marketplaces and Linking
Amazon Data Exchange – Third party data related to COVID-19 available for research & development
AWS Data Exchange is offering easily accessible, third party COVID-19 data in the cloud. AWS is working with organizations who make COVID-19 related data available on various sources such as public records, foot traffic and business visitation patterns, and economic activity.
Datavant – Collaborative research database open for researchers & policymakers to support public health & clinical research
Consortium of leading healthcare companies jointly launched a COVID-19 Research Database, which is a secure repository of HIPPA compliant de-identified and limited patient level datasets. The datasets will help support researchers & policymakers in driving insights on combating the COVID-19 pandemic. The database comprises a large, diverse repository of real-world data, including medical claims, pharmacy claims, electronic health records, and demographic data.
The database is a pro bono , cross industry collaboration of companies including Advarra, Aetion, AnalyticsIQ, Arcadia.io, Berkeley Research Group, BHE, Change Healthcare, Datavant, Elsevier, Glooko, Health Care Cost Institute, Healthjump, Helix, Medidata, Mirador Analytics, Munich Re Life US, Office Ally, OMNY, Parexel, Prognos Health, QIAGEN, SAS, Snowflake, Sumitomo Dainippon Pharma, Symphony Health, Veradigm, and Verana Health.
Health Verity and Aetion – Real world evidence platform that offer decision ready insights to accelerate approvals and market access for COVID-19 treatment
Aetion and HealthVerity have jointly developed a platform that supports biopharma and regulators gauging new COVID-19 treatments. The Real-Time Evidence Platform, is built on an instance of Aetion’s platform and focuses on up-to-date usage, safety and effectiveness data. The platform will help in real time trend reporting and the interactive data visualizer to demonstrate the COVID-19’s overall impact and the access of treatment.
OHDSI – Open source initiative to advance healthcare decision making in response to global pandemic
The Observational Health Data Sciences and Informatics (OHDSI) international community hosted a COVID 19 virtual study-a-thon to generate real world evidence on COVID-19. The study witnessed around 290 participants from 29 different countries. The study aimed at generating immediate RWE on prioritized questions shared by national governments, healthcare institutions, public health agencies and community members. It also focused on designing COVID-19 specific studies which can be validated and run as per the availability of data.
The community will initiate its research by designing & implementing a series of observational studies across its global network of data captured during clinical practice. The data includes EHR & administrative claims, and patient experiences prior to COVID-19 outbreak.
This retrospective analysis will evaluate the safety of proposed drugs and effects of various treatments on historical viral diseases. It will also predict outcomes for patients with viral symptoms or complications. Patient privacy will be protected in all cases.
i2b2/tranSMART – Collaborative database for analysis of COVID-19 patients
I2b2 tranSMART foundation and the community are jointly working to combine national and international data for analyses of the COVID-19 patients. The 4CE Consortium called as Consortium for Clinical Characterization of Covid19 by EHR is a globally distributed collaboration across health centers.
Currently, the consortium has around 96 hospital collaboration across the globe
PCORI – Funding to apply PCORI research networks and infrastructure to meet COVID research needs
The US patient centered outcome research institute (PCORI) has launched a $21 million to support COVID-19 research activities. The COVID-19 fund will back projects that assist communities in increasing their abilities to participate in patient-centered outcomes research or comparative clinical effectiveness research whilst at the same time adhering and responding to social distancing and other changes resulting from the COVID-19 pandemic. The existing PCORI network provides existing infrastructure for conducting RWE research initiatives.
IBM Truven and Explorys – Providing patient level data through EHR networks and integrated large scale claims data
Integrated, patient-level claims data reflecting the real-world continuum and cost of health care. With over 256M unique patient lives, it facilitates research on specific patient segments. Complete episodes of care can support more inclusive cost and treatment studies. Claims data can be linked to other data including electronic health records and can enhance research in many disease areas including COVID-19. Offering access to a limited set of academics with a 6 months free license of Marketscan.
Health Catalyst – Patient tracking & public health surveillance solutions to generate insights on COVID-19 resource utilization, capacity management, testing and treatment outcomes
Health Catalyst launched multiple COVID-19 solutions focused on patient tracking, public health surveillance and staff augmentation support. Patient and staff tracker enables health system clients to track COVID-19 positive patients within the health system, their interactions with staff members to drive capacity management, testing, quarantine, and decontamination activities.
Its Public Health Surveillance tool identifies unusual patterns of symptoms and clinical tests with an aim of flagging those events. It allows hospital epidemiologists and infection control personnel to perform local, rapid and preliminary assessments of patient-level clinical data to determine the significance of information for bio surveillance programs. Staff augmentation support is an offering to hospitals to utilize health catalyst’s staff.
Company’s Touchstone platform consisting of 80 million de-identified patient records is used to generate real-world COVID-19 insights related to surveillance, testing, capacity planning, and treatment response
LabCorp and Ciox – Combination of lab testing & longitudinal medical records to accelerate research in COVID-19 diagnosis, treatment & prevention
LabCorp and Ciox Health collaborated to develop a US based comprehensive COVID-19 patient data registry. The registry consists of curated, HIPAA compliant de-identified datasets to drive clinical research and analysis related to COVID-19. It will leverage de-identified datasets from its COVID-19 testing platform and longitudinal medical records compiled from Ciox Health DataFit Platform. The registry will enable researchers to better understand and characterize COVID-19 diagnoses and treatments and generate insights that will aid ongoing and future pandemic preparedness and prevention efforts.
LabCorp has performed approximately 500,000 tests since first making its COVID-19 test available March 5
Trinetx – Incorporation of specific COVID-19 terminologies to expand data research at global scale
Trinetx recently updated its real-world data platform to incorporate specific COVID-19 terminology. It includes diagnosis and LOINC terminology, World Health Organization (WHO) and Centers for Disease Control (CDC) specific coding guidelines to support novel coronavirus test results. In addition, the company is collaborating with its network of 150 HCO’s to connect pharma companies to sites that are open to receive COVID-19 clinical trials & studies.
IQVIA – Opt-in patient registry focused on advancing COVID-19 disease understanding through patient insights
IQVIA launched an opt-in patient registry, COVID Active Research Experience Project (CARE) to enhance the understanding of COVID-19 disease through shared information about disease prevalence, symptom progression, and treatment outcomes. The registry offers enrollment opportunities to all the U.S. residents exposed to COVID-19 infection. The registry will collect multiple data elements from consented patients including demographics, symptoms and some medical history. Patient insights would help healthcare stakeholders such as biotech, medical devices, pharmaceutical companies, medical researchers, government agencies, and payers to gain deeper understanding of diseases, human behaviors and scientific advances.
Oracle – Evaluating safety & effectiveness of COVID-19 drugs through real-time tracking of patient outcomes
Oracle has built a COVID-19 Therapeutic Learning System for physicians and patients to record effectiveness of COVID-19 drug therapies. These drugs including Remdesivir, Hydroxychloroquine and Kaletra have been used to treat other diseases but are not yet proven to be effective against COVID-19. Physicians are now prescribing these drugs on a regular basis. The system allows physicians to record patient’s daily progress to discover the effectiveness of these drugs against COVID-19 infection. The data will also provide insights on its optimal dosage and how early these drugs should be administered.
Medable – Research collaboration enabling access to COVID-19 real world data to researchers
Medable has launched a research collaboration with five other organizations BioIntelliSense, Datavant, Parexel, PWNHealth, and the American Heart Association’s Center for Health Technology and Innovation to develop diagnostics and treatment for COVID-19. American COVID-19 Collaborative Enabling Seamless Science (ACCESS) initiative connects researchers and clinical trial teams with homebound patients in the U.S via a mobile app. It also provides screening, disease and immunity status testing, and general lab testing services through PWNHealth. It enables researchers to access anonymized health records, claims, and diagnostic data through Datavant.
Mayo, Epic and Amazon – Health systems and HIT teams to support care delivery during COVID-19 pandemic
Multiple private organizations including Mayo Clinic, Epic, Amazon and others collaborated to form the COVID-19 Healthcare Coalition to provide real time data analytics solutions. The coalition members will bring their unique plan, assets and resources to support patient care. Organizations will use real world data to understand the effectiveness of community mitigation efforts and to identify at risk people. The data could include information such as clinical insights and resource requirements, like ventilators and beds.
Stanford – Data driven COVID-19 model to assess the impact of non-pharma interventions
Stanford University researchers have launched an interactive data driven COVID-19 model that evaluates the possible outcomes of non-pharma interventions for COVID-19, such as quarantine & social distancing. The modelling framework allows implementation of different types, intensities and durations of interventions to track how these different interventions impact the number of COVID-19 cases and fatalities over time.
Definitive Healthcare and ESRI – Real time tracking of hospital bed capacity through a data driven platform
Definitive Healthcare collaborated with Esri to launch a data platform that tracks hospital bed capacity during COVID-19 in the US. The resource displays location and number of licensed beds, ICU beds, staffed beds, and total bed utilization rates in the US. The companies have designed this resource to provide researchers, public health authorities and the public with information to identify geographic areas at risk and places with low capacity to accommodate sick patients.
CSSE and Johns Hopkins – RWD dashboard to support real time tracking & monitoring of COVID-19 cases across the globe
The Center for Systems Science and Engineering (CSSE) at Johns Hopkins University has created an interactive, web-based dashboard that monitors real time data on confirmed COVID-19 cases, deaths, recoveries for all affected countries. The research team tracks multiple sources to track new cases including Twitter feeds, online news portals, and direct communication through dashboards. Researchers confirm the collected information with WHO, CDC and China CDC before uploading it to the dashboard. Dashboard reports cases at city level in the US, Australia and Canada, province level in China and the country level otherwise.
HCA and Google Cloud – Data sharing platform enabling tracking of healthcare utilization parameters to optimize care during COVID-19 pandemic
HCA Healthcare and Google Cloud have jointly developed a new open data platform to drive data sharing during COVID-19 pandemic. The COVID-19 National Response portal will aggregate ICU bed and ventilator utilization, test results, and other information related to COVID-19. The portal is designed and operated by SADA, to help healthcare providers across the US to safely share and display aggregated metrics from health systems. These metrics include IVU bed supply & utilization, ventilator supply & utilization, total number of positive, negative & pending test results and total number of healthy patients who have been discharged.
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