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									OMERACT Community Forum - Recent Posts				            </title>
            <link>https://omeract.org/forum/</link>
            <description>This forum provides a dedicated space for open discussion as OMERACT Working Groups move through the Core Domain Set Endorsement and Instrument Selection Ratification processes. Each Working Group has its own forum where participants can ask questions, seek clarification, and share constructive feedback. These discussions foster transparency, inclusivity, and collaboration, helping ensure all voices are heard and that participants feel confident in their understanding before completing an endorsement or ratification.</description>
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                        <title>Answer to: varying attribution to the disease in the domain definitions</title>
                        <link>https://omeract.org/forum/cppd-cds/varying-attribution-to-the-disease-in-the-domain-definitions/#post-21</link>
                        <pubDate>Thu, 30 Oct 2025 13:53:18 +0000</pubDate>
                        <description><![CDATA[Thanks for your supportive comments. Re attribution of symptoms, in general, these have been defined as ‘due to CPPD” or ‘affected joint’ in the definitions, and in the case of acute CPP cry...]]></description>
                        <content:encoded><![CDATA[<p><span>Thanks for your supportive comments. Re attribution of symptoms, in general, these have been defined as ‘due to CPPD” or ‘affected joint’ in the definitions, and in the case of acute CPP crystal arthritis domains, tenderness and swelling of ‘the index joint’. It can be challenging to differentiate between symptoms due to CPPD and osteoarthritis, and in general, we have tried to make the outcomes specific to CPPD. We agree that this will need to be reviewed in detail as part of the instrument development, and we’ll put this on the agenda for this next step.</span></p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>omeractadmin</dc:creator>
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                        <title>varying attribution to the disease in the domain definitions</title>
                        <link>https://omeract.org/forum/cppd-cds/varying-attribution-to-the-disease-in-the-domain-definitions/#post-20</link>
                        <pubDate>Thu, 30 Oct 2025 13:52:50 +0000</pubDate>
                        <description><![CDATA[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 ...]]></description>
                        <content:encoded><![CDATA[<p><span>First of all, my compliments for a great process so far. Very clear, understandable, and reasonable.<br /><br />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.<br /><br />Pain intensity: 'pain due to CPPD disease' but it doesn't say 'joint' even though that is added in the explanation.<br /><br />Joint tenderness: ‘the affected joints’ I assume 'by the disease'?<br /><br />Joint swelling: ‘joints affected by effusion or synovitis’ which suggests assessing all joints<br /><br />Joint damage: no mention of affected joint, so again assessment of many joints, just a few, or only one?</span></p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>omeractadmin</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/varying-attribution-to-the-disease-in-the-domain-definitions/#post-20</guid>
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                        <title>Answer to: Endorsement of the OMERACT CPPD Core Domain Sets</title>
                        <link>https://omeract.org/forum/cppd-cds/endorsement-of-the-omeract-cppd-core-domain-sets/#post-19</link>
                        <pubDate>Tue, 28 Oct 2025 13:09:27 +0000</pubDate>
                        <description><![CDATA[Thank you, Professor Caso, for your kind words and thoughtful support of the CPPD Core Domain Sets. We truly appreciate your recognition of the methodological and patient-centered rigour tha...]]></description>
                        <content:encoded><![CDATA[<p data-start="78" data-end="288">Thank you, Professor Caso, for your kind words and thoughtful support of the CPPD Core Domain Sets. We truly appreciate your recognition of the methodological and patient-centered rigour that guided this work.</p>
<p data-start="290" data-end="450">We’ve added you to the CPPD Working Group mailing list so you’ll receive future updates and invitations to participate in upcoming activities and discussions.</p>
<p data-start="452" data-end="597">We’re delighted by your interest in contributing to the next stages of this important initiative and look forward to your continued engagement.</p>
<p data-start="599" data-end="651">Warm regards,<br data-start="612" data-end="615" /><strong data-start="615" data-end="649">The OMERACT CPPD Working Group</strong></p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>omeractadmin</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/endorsement-of-the-omeract-cppd-core-domain-sets/#post-19</guid>
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                        <title>Answer to: 2 different core sets or just one?</title>
                        <link>https://omeract.org/forum/cppd-cds/2-different-core-sets-or-just-one/#post-18</link>
                        <pubDate>Tue, 28 Oct 2025 13:00:55 +0000</pubDate>
                        <description><![CDATA[Thanks for this comment. The decision to develop two core sets was made very early in the development process, with a vote to take this approach at a virtual OMERACT SIG in 2020. We used thi...]]></description>
                        <content:encoded><![CDATA[<p><span>Thanks for this comment. The decision to develop two core sets was made very early in the development process, with a vote to take this approach at a virtual </span><a class="glossaryLink" role="link" href="https://omeract.org/glossary/omeract/" aria-describedby="tt" data-cmtooltip="&lt;div class=glossaryItemTitle&gt;OMERACT&lt;/div&gt;&lt;div class=glossaryItemBody&gt; OMERACT is a global, volunteer-driven, not for profit organisation committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.Through rigorous methodology and our global Working Groups, OMERACT supports the development of Core Outcome Sets (COS), identifying patient and disease-relevant areas to be measured (domains) and the corresponding measurement instruments for use in clinical trials, including those for regulatory approval of new treatments. &lt;/div&gt;" data-mobile-support="0" data-gt-translate-attributes="">OMERACT</a><span> SIG in 2020. We used this approach in all the </span><a class="glossaryLink" role="link" href="https://omeract.org/glossary/delphi/" aria-describedby="tt" data-cmtooltip="&lt;div class=glossaryItemTitle&gt;Delphi&lt;/div&gt;&lt;div class=glossaryItemBody&gt; a structured, anonymous, and iterative consultation method used to achieve consensus among a group of experts or stakeholders. It involves multiple rounds of questioning, feedback, and re-rating to refine opinions and move toward agreement on key issues.Synonyms: Delphi Survey, Delphi MethodExampleAn OMERACT working group uses the Delphi Method to identify which patient-reported outcomes are most important for a new core domain set. Participants anonymously rate the importance of each domain over several rounds until consensus is reached. &lt;/div&gt;" data-mobile-support="0" data-gt-translate-attributes="">Delphi</a><span> exercises. This aligns with the approach taken for the </span><a class="glossaryLink" role="link" href="https://omeract.org/glossary/omeract/" aria-describedby="tt" data-cmtooltip="&lt;div class=glossaryItemTitle&gt;OMERACT&lt;/div&gt;&lt;div class=glossaryItemBody&gt; OMERACT is a global, volunteer-driven, not for profit organisation committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.Through rigorous methodology and our global Working Groups, OMERACT supports the development of Core Outcome Sets (COS), identifying patient and disease-relevant areas to be measured (domains) and the corresponding measurement instruments for use in clinical trials, including those for regulatory approval of new treatments. &lt;/div&gt;" data-mobile-support="0" data-gt-translate-attributes="">OMERACT</a><span> core domains for gout, another crystal arthritis (gout flare domains and long-term gout domains). For CPPD, the core outcomes for acute CPP crystal arthritis and the core outcomes for </span><a class="glossaryLink" role="link" href="https://omeract.org/glossary/chronic/" aria-describedby="tt" data-cmtooltip="&lt;div class=glossaryItemTitle&gt;Chronic&lt;/div&gt;&lt;div class=glossaryItemBody&gt; a disease or condition that lasts for a long time—often for months, years, or a lifetime—and typically requires ongoing management rather than a one-time cure. Chronic conditions may be stable, progressive, or fluctuating, but they generally persist rather than resolve quickly.Synonyms: Long-term, LifelongExampleDiabetes mellitus is a chronic condition. It cannot currently be cured, but it can be managed with medication, diet, and lifestyle changes to maintain health over a person’s lifetime. &lt;/div&gt;" data-mobile-support="0" data-gt-translate-attributes="">chronic</a><span> and recurrent CPPD disease are not the same, although there are some overlapping domains (for example pain intensity, overall function, and </span><a class="glossaryLink" role="link" href="https://omeract.org/glossary/patient/" aria-describedby="tt" data-cmtooltip="&lt;div class=glossaryItemTitle&gt;Patient&lt;/div&gt;&lt;div class=glossaryItemBody&gt; a person who is receiving, has received, or may receive health care services. This includes individuals facing health-related decisions (such as whether to undergo screening), those being evaluated for a condition (diagnostic testing), or those undergoing treatment for an existing disease. In broader contexts, the term also encompasses people seeking preventive care or participating in health programs.Abbreviation: PtSynonyms: Health Care Consumer, Health Consumer, End User (in the context of patient decision aids)ExampleA 52-year-old woman considering whether to have a mammogram is a patient because she is making a health-related screening decision and may receive care based on the outcome of that decision. &lt;/div&gt;" data-mobile-support="0" data-gt-translate-attributes="">patient</a><span> global assessment).</span></p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>omeractadmin</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/2-different-core-sets-or-just-one/#post-18</guid>
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                        <title>2 different core sets or just one?</title>
                        <link>https://omeract.org/forum/cppd-cds/2-different-core-sets-or-just-one/#post-14</link>
                        <pubDate>Mon, 27 Oct 2025 12:12:20 +0000</pubDate>
                        <description><![CDATA[I think you should go ahead with what you have now, we don&#039;t want to delay things. But having arrived at this point, I note the core sets show strong overlap, so in a revision you could merg...]]></description>
                        <content:encoded><![CDATA[<p>I think you should go ahead with what you have now, we don't want to delay things. But having arrived at this point, I note the core sets show strong overlap, so in a revision you could merge them and make the differences situation-specific.</p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>Maarten Boers</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/2-different-core-sets-or-just-one/#post-14</guid>
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                        <title>Endorsement of the OMERACT CPPD Core Domain Sets</title>
                        <link>https://omeract.org/forum/cppd-cds/endorsement-of-the-omeract-cppd-core-domain-sets/#post-12</link>
                        <pubDate>Sat, 25 Oct 2025 06:45:31 +0000</pubDate>
                        <description><![CDATA[Endorsement of the OMERACT CPPD Core Domain Sets

I fully support the proposed CPPD Core Domain Sets, an excellent and methodologically robust initiative by the OMERACT CPPD Working Group....]]></description>
                        <content:encoded><![CDATA[<p data-start="276" data-end="339">Endorsement of the OMERACT CPPD Core Domain Sets</p>
<blockquote data-start="341" data-end="969">
<p data-start="343" data-end="645">I fully support the proposed CPPD Core Domain Sets, an excellent and methodologically robust initiative by the OMERACT CPPD Working Group.<br data-start="482" data-end="485" />This work provides a rigorous, patient-centered framework that will greatly enhance the consistency, comparability, and clinical relevance of CPPD research.</p>
<p data-start="652" data-end="799">I would also be pleased to contribute actively to the ongoing activities and future work of the CPPD Working Group, should the opportunity arise.</p>
<p data-start="806" data-end="896">Congratulations to the Working Group for this outstanding and collaborative achievement.</p>
<p data-start="903" data-end="969"><em data-start="903" data-end="928">Francesco Caso, MD, PhD, MSc, Professor of Rheumatology, </em><em data-start="933" data-end="967">University of Naples Federico II, Naples, Italy</em></p>
</blockquote>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>Francesco Caso</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/endorsement-of-the-omeract-cppd-core-domain-sets/#post-12</guid>
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                        <title>Answer to: Additional considerations from the CPPD working group Discussed in working group and felt to be a circumstance dependent domain as only relevant in clinical trials evaluating structure modifying treatments. It would not make sense for all ...</title>
                        <link>https://omeract.org/forum/cppd-cds/additional-considerations-from-the-cppd-working-group-discussed-in-working-group-and-felt-to-be-a-circumstance-dependent-domain-as-only-relevant-in-clinical-trials-evaluating-structure-modifying-treat/#post-10</link>
                        <pubDate>Fri, 17 Oct 2025 19:56:12 +0000</pubDate>
                        <description><![CDATA[Thanks for your comment. ‘Joint damage on imaging tests’ is a circumstances dependent core domain under the proposed framework. This means that this domain was recognised as very important, ...]]></description>
                        <content:encoded><![CDATA[<p><span>Thanks for your comment. ‘Joint damage on imaging tests’ is a circumstances dependent core domain under the proposed framework. This means that this domain was recognised as very important, but may not be appropriate in all CPPD studies. In particular, in trials in which structure modification is unlikely to occur, this isn’t considered a core domain. Examples of such studies might be a trial of regular paracetamol vs placebo, or a trial of occupational therapy plus patient education vs patient education alone. The core domains listed in the central part of the onion are those that should be measured in every study.</span></p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>omeractadmin</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/additional-considerations-from-the-cppd-working-group-discussed-in-working-group-and-felt-to-be-a-circumstance-dependent-domain-as-only-relevant-in-clinical-trials-evaluating-structure-modifying-treat/#post-10</guid>
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                        <title>Answer to: Duration of acute CPP crystal arthritis flare :While the domain is defined as “the length of time a person experiences a flare, measured in days,” could the working group clarify how flare resolution is defined?</title>
                        <link>https://omeract.org/forum/cppd-cds/#post-9</link>
                        <pubDate>Fri, 17 Oct 2025 13:43:29 +0000</pubDate>
                        <description><![CDATA[Thanks, this domain captures the number of days that the person experiences an acute CPP crystal arthritis flare. As part of the instrument development/validation for this domain, it will be...]]></description>
                        <content:encoded><![CDATA[<p style="font-weight: 400">Thanks, this domain captures the number of days that the person experiences an acute CPP crystal arthritis flare. As part of the instrument development/validation for this domain, it will be important to identify instruments to measure the state of flare and also define flare resolution. These instruments will be patient-reported, but will need to be validated against other measures (such as rheumatologist assessment and imaging findings).</p>
<p style="font-weight: 400">There are validated definitions for patient-reported flare (Cipolletta Rheumatology (Oxford) 2025, DOI: 10.1093/rheumatology/keae681), and it is likely that these definitions will be used to inform instrument development for this domain in the next phase of the OMERACT process. These definitions take into account patient-reported flare, together with patient-reported joint warmth and joint swelling.</p>
<p style="font-weight: 400">Flare resolution is a very topical issue in the field of crystal arthritis! At this stage, resolution of an acute CPP crystal arthritis flare hasn’t been defined, and this is work that will be required as part of the instrument development/validation for this domain. We anticipate that flare resolution will be a patient-reported outcome, and will be defined by improvement of pain and function to baseline levels, and potentially other measures such as improvement of patient-reported joint warmth, swelling and tenderness to baseline levels.</p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>omeractadmin</dc:creator>
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                        <title>Additional considerations from the CPPD working group Discussed in working group and felt to be a circumstance dependent domain as only relevant in clinical trials evaluating structure modifying treatments. It would not make sense for all long-term s</title>
                        <link>https://omeract.org/forum/cppd-cds/additional-considerations-from-the-cppd-working-group-discussed-in-working-group-and-felt-to-be-a-circumstance-dependent-domain-as-only-relevant-in-clinical-trials-evaluating-structure-modifying-treat/#post-8</link>
                        <pubDate>Fri, 17 Oct 2025 11:16:26 +0000</pubDate>
                        <description><![CDATA[As a radiologist I am a bit surprised with that final conclusion :&quot;It would not make sense for all long-term studies to measure damage to joints on imaging. &quot; since CPPD disease may lead to ...]]></description>
                        <content:encoded><![CDATA[<p>As a radiologist I am a bit surprised with that final conclusion :"It would not make sense for all long-term studies to measure damage to joints on imaging. " since CPPD disease may lead to serious complications, e.g. joints instability (wrist), protrusio acetabuli, cervical spine subluxation, dens fracture, nerves compression- complications requiring constant survailance, not rarely surgical treatment.</p>
<p>&nbsp;</p>
<p>&nbsp;</p>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>Iwona</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/additional-considerations-from-the-cppd-working-group-discussed-in-working-group-and-felt-to-be-a-circumstance-dependent-domain-as-only-relevant-in-clinical-trials-evaluating-structure-modifying-treat/#post-8</guid>
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                        <title>Duration of acute CPP crystal arthritis flare :While the domain is defined as “the length of time a person experiences a flare, measured in days,” could the working group clarify how flare resolution is defined?</title>
                        <link>https://omeract.org/forum/cppd-cds/#post-7</link>
                        <pubDate>Thu, 16 Oct 2025 20:37:19 +0000</pubDate>
                        <description><![CDATA[For example, is resolution determined by patient-reported complete relief of pain, or by clinician-assessed absence of tenderness/swelling, or both?This might affect how the duration domain ...]]></description>
                        <content:encoded><![CDATA[<blockquote data-start="511" data-end="931">
<p data-start="513" data-end="931">For example, is resolution determined by <strong data-start="729" data-end="773">patient-reported complete relief of pain</strong>, or by <strong data-start="781" data-end="834">clinician-assessed absence of tenderness/swelling</strong>, or both?<br data-start="844" data-end="847" />This might affect how the duration domain is measured consistently across studies.</p>
</blockquote>]]></content:encoded>
						                            <category domain="https://omeract.org/forum/"></category>                        <dc:creator>victoriachiarvetto</dc:creator>
                        <guid isPermaLink="true">https://omeract.org/forum/cppd-cds/#post-7</guid>
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