Real-World Data

‘“It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts”

Sherlock Holmes
blue and silver stetoscope
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What is Real-World Data?

  • Real-world data: an opportunity to supplement existing evidence for the use of long-established medicines in health care decision making. In this article, Katkade et al. review the sources of RWD and their complexities.
  • What Is Real-World Data? A Review of Definitions Based on Literature and Stakeholder Interviews. Iin this article Makady et al. review RWD definitions to shed light on similarities and differences between them.
  • Real-world data and the patient perspective: the PROmise of social media? In this article, McDonald et al. reflect on the role of social media as a novel means to capture the patient voice.

Sources

Registries and Biobanks

  • ENCePP Resources Database. An electronic index of available European Union research organisations, networks and data sources, including patient registries.
  • National Institutes of Health´s list of registries.
  • Orphanet. A list of registries and biobanks on rare diseases.
  • UK Biobank. A large-scale biomedical database and research resource, containing in-depth genetic and health information from half a million UK participants.
  • United States Renal Data System (USRDS) A national data system that collects, analyzes, and distributes information about chronic kidney disease and end-stage renal disease in the US.
  • Scientific Registry of Transplant Recipients (SRTR). A resource for epidemiological data and statistical analyses regarding the status of solid organ transplantation and the transplantation system in the US.
  • Canadian Clinical Trials Asset Map (CCTAM). A pan-Canadian research inventory of investigators, clinical research sites, hospitals, institutions, research ethics boards and other clinical research resources, including patient registries.

Electronic Health Records

  • National Patient-Centered Clinical Research Network (PCORnet). A PCORI-funded initiative to enable patient-centered clinical research to be conducted faster, more easily, and more efficiently.
  • Electronic healthcare databases (EHDs) in Europe. In this article, Pacurariu et al. provide insights into 34 available EHDs to support regulatory decisions on medicines.
  • Portail Epidemiologie. A catalogue of health databases in France.
  • Medical Information Mart for Intensive Care (MIMIC). A dataset comprising de-identified health data associated with ~60,000 intensive care unit admissions. Includes demographics, vital signs, laboratory tests, medications, and more.

Administrative and Claims Records

  • Research Data Assistance Center. ResDAC is a Centers for US Medicare and Medicaid Services (CMS) contractor that provides free assistance to academic, non-profit, for-profit and government researchers interested in CMS data.
  • All-Payer Claims Databases. In the US, APCDs are large-scale databases that systematically collect health care claims data from a variety of payer sources which include claims from most health care providers. The APCD Council provides links to accessing APCDs by State.
  • A review of accessibility of administrative healthcare databases in the Asia-Pacific region. An article by Milea et al.

Patient Reported Outcomes

  • PatientsLikeMe. An integrated community, health management, and real-world data platform where patients can share personal stories and information about their health, symptoms, and treatments.

Miscellaneous

  • A Review of Real-World Data Sources used in Orthopaedic Research.
  • Global Health Data Exchange: a catalog of surveys, censuses, vital statistics, and other health-related data.
  • Centers for Disease Control and Prevention Data Catalog. Numerous CDC datasets for public use.
  • Oncology data landscape in Europe Data sources & initiatives. An EFPIA research report (2018).
  • Finnish Social Science Data Archive. Single point of access to a wide range of digital research data for learning, teaching and research purposes.
  • Canadian Research Centre Data Network. Provides access to detailed microdata from Statistics Canada’s surveys and to Canadian censuses’ data.
  • All Dutch Research, in one place. A comprehensive and open dataset of research information covering 3m publications, 500k research data, 100 research software items, from 48data sources, linked to 3k grants and 900 organizations..