About the Patient Preferences to Value Health Outcomes in Rheumatology Clinical Trials (PPRCTs) Working Group

Researchers, patients, clinicians and policy-makers need to make certain trade-offs when making treatment decisions. These trade-offs include treatment safety, cost, duration, and effectiveness. Understanding patient preferences for these trade-offs is critical to making sure that the evidence we generate and use is relevant for the patients and physicians who have to make these choices every day.

Our work will provide foundational knowledge regarding the most appropriate and feasible methods researchers can use to measure patient preferences to inform clinical trial design and interpretation. We will first review the published literature to understand how and when these methods may be used. We will then engage relevant stakeholders including patients, doctors and researchers to understand their perspectives. Through our OMERACT Special Interests Group, we will work with relevant stakeholders, and use our research to develop a ‘handbook’ on how and when to use these methods. This handbook will be used to help walk researchers through these methods and will form the basis for future research to use these methods in real-world applications.It is important to do this research because it will support the use of patient values when designing clinical trials. This will help ensure that evidence on treatments applies to the patients who will be using them. Though we are working within rheumatologywith this group,our results could be applicableto other specialties.

Nick Bansback

Nick Bansback

Co-Chair

Annelies

Annelies Boonen

Co-Chair

Rachelle Buchbinder

Rachelle Buchbinder

Co-Chair

Liana Fraenkel

Liana Fraenkel

Co-Chair

Glen Hazelwood

Glen Hazlewood

Co-Chair

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Megan Thomas

Fellow

Laurie Proulx

Laurie Proulx

Patient Research Partner

Pam Richards

Pam Richards

Patient Research Partner

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Dawn Richards

Patient Research Partner

PPRCTs Whiteboard Overview

Working Group Members:

Adena Batterman
Adenike Adebajo
Adewale Adebajo
Ales Ambrozic
Angela Fearon
Angie Botto-van Bemden
Aya Akmal Amin
Ayse Kuspinar
B Robert Mozayeni
Beverley Shea
Bruno Mazuquin
Chiara Naseri
Chris Djurtoft
Daeria Lawson

Deborah Marshall
Denise Bury
Diana Hollander
Fiona Howard
Florian Naye
Francis Guillemin
Gary Choque
Glen Hazlewood
Hema Chaplin
Ilfita Sahbudin
Jean-Noel Talabardon
Josephine Park
Judith Safford
Kai Sun

Kelly O'Brien
Kerrie-Anne Ho
Laurie Proulx
Liana Fraenkel
Madusha Menu Cristeen Jayasinghe
Manuel Lubinus
Megan Thomas
Mickael Hiligsmann
Monica Vieth
Mwidimi Ndosi
Nick Bansback
Pakeezah Saadat

Pamela Richards
Patricia Hurley
Peter Tugwell
Rachelle Buchbinder
Robyn Speerin
Sandra Nolte
Sougata Panda
Sytske Anne Bergstra
Takako Kaneyasu
Tamer Gheita
Yeonhew Kim
Yuya Imai

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