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Introducing the Real World Evidence Study Registry

Oct. 26, 2021

Charlottesville, VA — ISPOR—The Professional Society for Health Economics and Outcomes Research and the Center for Open Science (COS) are pleased to announce the launch of the Real-World Evidence Registry, a new repository dedicated to increasing the rigor, discoverability, and reuse of research in the field of health outcomes. 

The registry is a project of the Real-World Evidence Transparency Initiative, a partnership between ISPOR, the International Society for Pharmacoepidemiology, the Duke-Margolis Center for Health Policy, and the National Pharmaceutical Council.

Accessible Real-World Evidence (RWE) research is of increasing interest for clinicians and researchers using Randomized Control Trials (RCTs) to examine the efficacy, safety, and impact of patient care and procedures. RWE studies supplement RCTs with timely and cost-effective data that can enable more diverse analysis through larger sample sizes. However, low trust in the credibility of RWE findings prevents the research from being used at a more prominent level in RCTs, and clinical researchers have called for greater transparency in real-world data collection and reporting to reduce bias and improve methodological rigor.

The RWE Registry actively addresses this tension by providing a platform where RWE researchers can practice and manage their studies transparently using open workflows and reporting mechanisms. Using the OSF Registries infrastructure, the RWE Registry interface facilitates the process of preregistration — a way for researchers to specify their research design in advance of a study and transparently report any changes or updates from the original plan.

“We are very excited to launch the Real-World Evidence Study Registry,” stated ISPOR’s Chief Science Officer Richard J. Willke, PhD. “The Registry has been designed to meet the specific needs of RWE studies and offers researchers a tool to enhance the credibility of their RWE research.”

“This registry will provide a home for transparent, credible, and trustworthy research coming the from RWE community,” says David Mellor, PhD, Director of Policy from the Center for Open Science. “We are grateful for the opportunity to partner with ISPOR on hosting this registry and look forward to supporting the community of researchers and consumers of this work in the years to come.” 

Visit cos.io/registries to explore how funders, societies, and research groups can empower their communities of practice with the open workflows and features necessary for practicing rigorous methods that yield high-impact research.


 

About ISPOR

ISPOR, the professional society for health economics and outcomes research (HEOR), is an international, multistakeholder, nonprofit dedicated to advancing HEOR excellence to improve decision making for health globally. The Society is the leading source for scientific conferences, peer-reviewed and MEDLINE®-indexed publications, good practices guidance, education, collaboration, and tools/resources in the field.

Inquiries: Betsy Lane blane@ispor.org
Web: ispor.org
Twitter: @isporog

About the Center for Open Science

The Center for Open Science (COS) is a non-profit technology and culture change organization founded in 2013 with a mission to increase openness, integrity, and reproducibility of scientific research. COS pursues this mission by building communities around open science practices, supporting metascience research, and developing and maintaining free, open source software tools. The OSF is a web application that provides a solution for the challenges facing researchers who want to pursue open science practices, including: a streamlined ability to manage their work; collaborate with others; discover and be discovered; preregister their studies; and make their code, materials, and data openly accessible. Learn more at cos.io and osf.io.

Inquiries: Nici Pfeiffer nici@cos.io
Web: cos.io
Twitter: @osframework

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