About the Patient Outcomes in Longitudinal Studies in RA Working Group

The goal of the OMERACT Patient Outcomes in Longitudinal Studies in RA group is to identify patient-centered long-term outcome domains and sub-domains for long-term studies in patients with rheumatic diseases. As a first step, the POLOS-RA group is addressing outcomes for rheumatoid arthritis (RA). Patient-centered outcomes are those which are relevant to patients and are essential to their well-being. We aim to develop a core set of patient-centered domains and subdomains for longitudinal observational cohorts and registries collecting long-term data on the outcomes of patients with RA.
The steps proposed are:
1) systematic review of existing registries and ongoing cohort studies;
2) qualitative studies to obtain the views and perception of patients with RA;
3) survey of stakeholders (patients, caregivers, clinicians and researchers) to rank and prioritize initial sets of domains and subdomains; and
4) final selection of domains using Delphi methods

Carmona

Loreto Carmona

Co-Chair

catherine hill

Catherine Hill

Co-Chair

Maria Suarez-Almazor

Maria Suarez-Almazor

Co-Chair

OMERACT_DBN_headshot[81]

Diego Benavent

Fellow

Cristiana Sieiro

Cristiana Sieiro Santos

Fellow

tiffany@aiarthritis.org

Tiffany Westrich Robinson

Patient Research Partner

Working Group Members:

Abir Mokbel
Adena Batterman
Adewale Adebajo
Ales Ambrozic
Allyson Jones
Alvaro Gomez
Amy Reynolds
Amye Leong
Andrea Falzon
Angie Botto-van Bemden
Annette McKinnon
Aya Akmal Amin
Ayse Kuspinar
B Robert Mozayeni
Beth Gottlieb
Beverley Shea
Bruno Mazuquin
Carlos Gonzalez
Caroline Flurey
Catherine Hill
Catherine Hofstetter
Charlie Goldsmith
Cheryl Barnabe
Clifton (Bing) Bingham
Connie Chen
Courage Uhunmwangho

Cristiana Sieiro Santos
Daeria Lawson
Daniel Meyer
Deb Constien
Denise Bury
Diana Hollander
Didem Saygin
Diego Benavent
Dorthe Bang Berthelsen
Edith Brown
Ellen Margrethe Hauge
Ernest Choy
Esi Morgan
Esther Francisca Vicente-Rabaneda
Fiona Howard
Francesca Ingegnoli
Francesco Caso
Gabriela Tabaj
Gary Choque
Grayson Schultz
Haner Direskeneli
Helen Keen
Hema Chaplin
Heta Patel
Ilfita Sahbudin
Ingrid de groot

Isabel Castrejon
Jacob Brauner
Jan René Nkeck
Jasvinder Singh
Jean-Noel Talabardon
Joan Weiner
Jorge Juan Fragio Gil
Kara Corps
Karen Herlyn
Karine Toupin April
Kate Mather
Kathryn Stok
Kathy Hammitt
Kelly O'Brien
Khaled Abdelgalil
Laura Castiblanco Orozco
Lihi Eder
Loreto Carmona
Lorna Neill
Lyn March
Maarten de Wit
Madusha Menu Cristeen Jayasinghe
Maja Radojcic
Margreet Kloppenburg
Maria Angeles Lopez-Olivo
Maria Saurez-Almazor

Maria Stoenoiu
Maria Teresa Romero de Albrecht
Mariana Souza
Marissa Lassere
Mark Campbell
Max Yates
Maya Desai
Merrilee Needham
Michelle Dowsey
Monica Vieth
Nevsun Inanc
Nino Tsiskarishvili
Niti Goel
Oliver Kramer
Oscar Russell
Patricia Hurley
Peter Boehm
Peter Choong
Peter Gray
Peter Tugwell
Philip Mease
Pil Hojgaard
Rachel Black
Rani Sinnathurai
Richard Vesely
Rieke Alten

Robert Landewe
Robin Christensen
Sabrina Mai Nielsen
Sam Cembalo
Sandra Nolte
Sarfaraz Hasni
Sasikala Bheemireddy
Saurab Sharma
Sevdalina Lambova
Shannan OHara-lwvi
Sougata Panda
Stanton Newman
Susan Goodman
Susanna Proudman
Suzanne Verstappen
Sytske Anne Bergstra
Takako Kaneyasu
Tamer Gheita
Tiffany Westrich-Robertson
Tim Pickles
Vibeke Strand
Wen-Hung Chen
Willemina Campbell
Win Min Oo
Yasser El Miedany

Interested in joining the working group as a member?

We are excited to invite you to join the OMERACT mailing list! This will ensure you stay updated on our latest news and activities.
In addition to joining our mailing list, we also encourage you to become part of our active Working Groups. Being part of these groups is an opportunity to collaborate with experts in the field, contribute to important discussions, and influence the future direction of rheumatology outcomes research.
We look forward to your valuable contributions and active participation in our community.

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