OMERACT Community Forum - Recent Topics

Clarifications and Feedback on Domain Coverage and Accessibility in the POLOS-RA Module

omeractadmin — Tue, 31 Mar 2026 14:25:16 +0000

Does fatigue include severity and impact? Also, will sleep quality, duration, or disturbance be included? (You mention pain interference, but night pain affecting sleep would be important.)
Can I ask why lifestyle factors were not included? Diet, PA, Smoking/Vaping, Alcohol use, etc
Also wondering about Mental and Emotional Health, Depression, anxiety, etc
Why has treatment burden not made the list (Time, complexity, side effect management/ adherence/ cost - is this in a different outcome?
Is medical error included in death, especially when we have seen errors come with low or high doses of MXT? Delighted that the patient's voice will be included in safety.

Feedback: The module needs to be improved in its accessibility: transcription of the video, and the ability to change the size, font style, and colour. Have a downloadable sheet of the full course. The course did not fully run through the immersive reader or provide a read-aloud option for those with visual impairments.

I’m not sure if I missed it, but did we cover quality of sleep or lack of sleep due to pain and mobility?

Cindy Copes — Tue, 31 Mar 2026 14:01:48 +0000

I’m not sure if I missed it, but did we cover quality of sleep or lack of sleep due to pain and mobility?

what is a core set? and other questions on this important initiative

Maarten Boers — Fri, 27 Mar 2026 12:16:42 +0000

First of all, my compliments on reaching this stage of an extensive and thoughtfully executed process. I especially enjoyed reading through the definitions and their clarifications. I think the current forms really work well in summarizing the thought- and deliberation process the group went through.

I do have some questions, though.

1. I'm not fully clear on what this core set represents, and its relationship to the OMERACT-ILAR RA core set.
I think we all agree that the RA core set is in dire need of an update, and also that it is aimed at clinical trials more than at longitudinal studies (LOS). So such an update should include a specification of any domains that are only intended for trials or for LOS. Also, the update should have the support and endorsement of all stakeholders, signifying that (among other things), patient-important outcome domains have been sufficiently included.
In the absence of this update, I applaud the current initiative to get things started. But I think it should be a step towards an updated RA core set, not a separate core set of patient important domains for use in LOS. Because that will create confusion in guidance as to what domains to include in LOS: the current RA core set plus this patient core set? How to handle the overlap in domains? Etc.
The generic core set definition shown in step 7 of your process inadvertently illustrates the above difficulties:
"This process has culminated in a Draft Core Domain Set. This set outline(s) core domains, a key aspect of health or well-being that is essential to define, measure and report in all clinical trials and other research studies."
So now all of a sudden you appear to be also redefining a core set for clinical trials...

As an aside, I would add: "...of a disease or health condition." Because I think that is what the term 'core set' is for. We should think of another term for sets of outcomes important to measure processes of care (eg, 'shared decision making').

2. Following on this: the scoping review and qualitative study focuses on patient values. But what about the values of other stakeholders (clinicians, researchers, payors...) in LOS? Would they need to develop their own core sets for LOS?

3. How do the chosen definitions mesh with the OMERACT initiative for foundational domains?

4. Joint involvement: it is hard not to rush to measurement issues. But the group will need to think carefully on how this domain interacts with things currently measured in LOS: joint counts, joint damage; and stiffness never assessed at joint level.

5. I thought OMERACT was moving away from including HRQoL as domain, rather focusing on better specified elements of HRQoL including some that are already present in this core set.

6. Minor: I think 'Comorbidity' should not be considered to be in life impact, but only in (Pathophysiological) Manifestations, as having the disease does not equate with a specific level of impact (eg, consider asymptomatic diabetes).

addition of a new pain measure to POLOS core domain set in the future as relevant to longitudinal outcome measures.

sharkho — Thu, 26 Mar 2026 17:33:02 +0000

Great work POLOS team. Think its important to measure more than pain intensity and pain interference for the 40% who suffer non-inflammatory pain (nociplastic pain) in RA. Can this instrument (measure) be added to core domain set (pathophysiological) in the future in addition to pain intensity when its developed.

Clarification on Structural Damage and Independence in the POLOS Core Domain Set

omeractadmin — Wed, 25 Mar 2026 19:02:38 +0000

To what extend is structural damage included in the POLOS core domain set?
Independence is included in the core domain set although it currently lacks a detailed description, waiting for input from another working group. Has the POLOS group considered to put it in the outer circle (domains for future consideration) or does the group has a provisional definition?

Joint deformity

HeidiSiddle — Wed, 25 Mar 2026 16:04:23 +0000

You report that 'Main themes identified describing joint involvement from this qualitative work: - Joint involvement includes: - Clinical and radiological manifestations of joints by RA - Degree and extent to which joints are affected by RA.'

Should deformity be included in your definition of joint involvement, in addition to joint swelling, tenderness and stiffness?

Strong Support for the POLOS Core Domain Set Endorsement and One Reflection

Francesco Caso — Mon, 23 Mar 2026 12:59:04 +0000

I fully support the endorsement of this Core Domain Set. This is a valuable and timely initiative addressing an important unmet need in rheumatoid arthritis research, particularly for longitudinal observational studies and registries. The development process appears rigorous, patient-centred, and well aligned with the OMERACT methodological framework. I believe this work will make an important contribution to the standardization and relevance of long-term RA research. It will also be interesting to follow how comorbidities are considered within the broader interpretation of long-term outcomes in RA.

Great work POLOS team. I would like to suggest that "Cause of Death" be added as a subdomain to Mortality.

Lyn.March — Wed, 18 Mar 2026 19:34:23 +0000

Great work POLOS team. I would like to suggest that "Cause of Death" be added as a subdomain to Mortality.

Fatigue in RA

Cesar Diaz — Tue, 17 Mar 2026 17:33:12 +0000

Good afternoon everyone, and thank you for the work done so far. As we know, fatigue in rheumatoid arthritis is a complex issue; at times, it is related to disease activity, and at others, it is secondary to other factors also related to the disease, though less directly (the same can happen with pain, but it is far less common). My questions are: 1) Why is fatigue not also included in the physical component? 2) How will we attempt to differentiate between the various causes of fatigue? Thank you very much

varying attribution to the disease in the domain definitions

omeractadmin — Thu, 30 Oct 2025 13:52:50 +0000

First of all, my compliments for a great process so far. Very clear, understandable, and reasonable.

This question pertains to the extent to which the domain is attributed to the disease. In the definitions this attribution is variable. I'm happy with any choice the group makes, but I think it would help the instrument phase if the attribution (or the lack of it) were made more explicit. My hunch is that in CPPD it makes sense to define target joints and do the assessments in those, not in the least because OA is such a concurrent condition.

Pain intensity: 'pain due to CPPD disease' but it doesn't say 'joint' even though that is added in the explanation.

Joint tenderness: ‘the affected joints’ I assume 'by the disease'?

Joint swelling: ‘joints affected by effusion or synovitis’ which suggests assessing all joints

Joint damage: no mention of affected joint, so again assessment of many joints, just a few, or only one?