WORKING GROUP NAME: PATIENT OUTCOMES IN LONGITUDINAL OBSERVATIONAL STUDIES (POLOS)

The goal of the OMERACT Patient Outcomes in Longitudinal Studies Special Interest Group (POLOS SIG) 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 SIG 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.

OMERACT Patient Outcomes in Longitudinal SIG Session Recording Nov 11 2020

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CO-CHAIRS

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Loreto Carmona:

loreto.carmona@inmusc.eu

Lyn March

Lyn March:

lyn.march@sydney.edu.au

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Maria Suarez-Almazor:

msalmazor@mdanderson.org

FELLOW

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Sebastian Bruera

PRP

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Niti Goel

PRP

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Amye Leong

PRP

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Tiffany Westrich Robinson

MEMBERSHIP:

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