What are patient-reported outcomes (PROs)?
Patient-reported outcomes (PROs) are patients’ own reports of how they feel, function, live their lives, and survive. PROs come directly from patients without amendment or interpretation by a clinician or anyone else.
Why are PROs useful in clinical trials and clinical practice?
To conduct high-quality clinical trials and provide truly patient-centered clinical care, it is critical to understand patients’ perspectives about their symptoms, functioning, and well-being.
When correctly measured, analyzed, and described, patient-reported outcomes (PROs) capture powerful insights and can inform and guide decision-making by researchers, clinicians, and patients.
What is The PROTEUS Consortium?
The PROTEUS Consortium is a distinguished international body that includes leading PRO researchers and representatives from key patient, clinician, research, health system, industry, policy, government, and regulatory groups.
Find a full list of participating organizations here.
The PROTEUS Consortium seeks to promote high quality PRO methods in clinical trials and clinical practice, so that patients can benefit as much as possible from the information that PROs can provide.
The PROTEUS Consortium is committed to high-quality science and rigor, building international consensus, and sharing PROs for the good of science and patient care.
Who leads the PROTEUS Consortium?
Claire Snyder, PhD, MHS, is Principal Investigator of The PROTEUS Consortium. Dr. Snyder is Professor of Medicine, Oncology, and Health Policy & Management at the Johns Hopkins Schools of Medicine and Public Health and Director of the Johns Hopkins Program for Building Lifestyle, Outcomes, and Care Services Research in Cancer (BLOCS)..
Michael Brundage, MD, MSc, is Co-Principal Investigator of The PROTEUS Consortium. Dr. Brundage is a Radiation Oncologist and Professor of Oncology, and in the Department of Public Health Sciences, at Queen’s University.
Norah Crossnohere, PhD, is Project Scientist of The PROTEUS Consortium. Dr. Crossnohere is a Research Scientist in The Ohio State University College of Medicine Department of Biomedical Informatics.
The members of the PROTEUS Steering Committee are listed here.
What does the PROTEUS website offer?
The PROTEUS website offers a curated collection of core resources and original tools to help navigate the use of patient-reported outcomes (PROs) in clinical trials and clinical practice.
There are two sets of resources, one to assist researchers using PROs in clinical trials (see PROTEUS-Trials), and another to assist clinicians and health systems using PROs in clinical practice (see PROTEUS-Practice).
Core resources for both PROTEUS-Trials and PROTEUS-Practice include a curated set of research articles and users’ guides providing options and recommendations for each stage in the PRO process, as well as suggestions for further reading.
Original PROTEUS-Trials tools include videos (with accompanying slides) presented by PRO experts who offer insights for each stage of the process; a step-by-step checklist for each stage; and stage-specific excerpts of the PROTEUS-Trials Handbook, which gathers the guidance from PROTEUS tools in a compact and user-friendly format.
All educational resources and tools on the PROTEUS website are cutting-edge, non-commercial, and nonpartisan.
Where can I learn the basics about patient-reported outcomes (PROs)?
While PROTEUS resources are primarily directed at those with knowledge of and familiarity with PROs, we have provided links to several resources that may be helpful to those who want to learn the basics about PROs here.
Does PROTEUS offer any resources for including PRO content in grant writing?
PRO content is an important element in many grant proposals and PROTEUS does offer curated resources to guide the inclusion of PROs in your grant writing. You can explore this article (Recommendations for including or reviewing patient reported outcome endpoints in grant applications) and gain further insights from the associated video presentation and PowerPoint presentation.
How do I find resources on the PROTEUS website?
You have four options for finding resources and information on the PROTEUS website.
You can use the main site navigation to select either PROTEUS-Trials or PROTEUS-Practice and explore the specific pages in each section. On each page, you’ll find a suite of resources (articles, videos, checklists, etc.) for that topic and/or research stage, (e.g., Developing Protocols, Selecting Measures, etc.) You’ll also find a set of suggested additional resources for further exploration.
You can visit the Navigating PROTEUS section and use the search bar to do a keyword search of our Resource Library.
Your can use the VIEW ALL RESOURCES option and scroll down the page to view the entire contents of the PROTEUS collection of curated resources.
To search for information other than resources (such as PROTEUS leadership, information on The PROTEUS Consortium, our funders, and more), please use the SEARCH WEBSITE bar located in the top right corner of every page.