About the Patient Outcomes in Longitudinal Studies Working Group

The goal of the OMERACT Patient Outcomes in Longitudinal Studies 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 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

Loreto Carmona

Loreto Carmona

Co-Chair

Lyn March

Lyn March

Co-Chair

Maria Suarez-Almazor

Maria Suarez-Almazor

Co-Chair

Sebastian Bruera

Sebastian Bruera

Fellow

niti goel

Niti Goel

Patient Research Partner

amye leong

Amye Leong

Patient Research Partner

Tiffany Westrich Robinson

Tiffany Westrich Robinson

Patient Research Partner

OMERACT 2020 Virtual SIG Session: Patient Outcomes in Longitudinal

Working Group Members:

Maria Suarez-Almazor
Robin Christensen
Lyn March
Loreto Carmona
Karla Criner
Jeffrey Curtis
Niti Goel
Max Yates
Grayson Schultz

Laura Gonzalez-Lopez
Francesa Ingegnoli
Louise Klokker
Amye Leong
Maria Lopez-Olivo
Lyn March
Jose Negron
Susanna Proudman
Deb Constien

Bev Shea
Lee Simon
Vibeke Strand
Peter Tugwell
Tiffany Westrich-Robertson
Natalia Zamora
Richard Zogala
Sebastian Bruera
Allyson Jones

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