Rheumatology Advances in Practice最新文献

{"title":"Quality of life and clinical gout assessments during pegloticase with and without methotrexate co-therapy: MIRROR randomized controlled trial exploratory findings.","authors":"John Botson, Katie Obermeyer, Brian LaMoreaux, Lissa Padnick-Silver, Supra Verma, Michael E Weinblatt, Jeff Peterson","doi":"10.1093/rap/rkae145","DOIUrl":"10.1093/rap/rkae145","url":null,"abstract":"<p><strong>Objectives: </strong>Pegloticase lowers serum urate (SU) but is limited by anti-drug antibodies. Methotrexate (MTX) co-administration increases urate-lowering response rate and decreases infusion reaction risk. This is of importance in uncontrolled gout patients who have few treatment options and highly impacted quality of life (QOL). Here, we report exploratory QOL/clinical endpoints of MIRROR RCT (NCT03994731).</p><p><strong>Methods: </strong>Patients with uncontrolled gout (sUA ≥ 7 mg/dl, urate-lowering tehraoy (ULT) failure/intolerance, and ≥1 gout sign/symptom [≥1 tophus, ≥2 flares in past year, chronic gouty arthritis]) were administered pegloticase (biweekly 8 mg infusion; 52 weeks) with oral MTX (15 mg/week) or placebo co-therapy. Key exploratory outcomes included change from baseline (CFB) in Physician Global Assessment of Gout [PhGA, score: 0-10], CFB in tender/swollen joint counts [TJC/SJC, score: 0-68/0-66], and gout chronic response rate (GCR50, GCR70; 50%/70% reduction in ≥3 of TJC, SJC, HAQ-Health, HAQ-Pain). Least-square mean (±S.E.) CFB to week 52 was estimated using a mixed model for repeated measures.</p><p><strong>Results: </strong>In total, 100 patients were randomized to pegloticase + MTX; 52 to pegloticase + PBO. At baseline, patients had poor overall health (HAQ-Health [MTX, PBO]: 44.9 ± 28.6, 39.1 ± 27.4; PhGA: 5.5 ± 2.1, 5.4 ± 2.2) and many affected joints (TJC: 5.4 ± 7.8, 6.7 ± 8.4; SJC: 8.3 ± 12.2, 11.0 ± 15.9). QOL progressively improved during treatment, with similar CFB at week 52 in MTX vs. PBO groups in PhGA (-4.2 ± 0.2 vs. -3.8 ± 0.3) and TJC/SJC (-6.1 ± 0.5 vs. -7.0 ± 0.8/-5.1 ± 0.4 vs. -6.0 ± 0.6). However, at week 52, more MTX patients met GCR50 (58.0% vs. 38.5%) and GCR70 (52.0% vs. 30.8%) criteria.</p><p><strong>Conclusion: </strong>In the MIRROR RCT, pegloticase treatment with or without MTX co-therapy led to meaningful clinical/QOL improvements in uncontrolled gout patients. However, patients receiving MTX co-therapy had greater benefits because of a higher sustained SU-lowering rate (60.0% vs. 30.8% in the PBO group at week 52).</p><p><strong>Trial registration: </strong>ClinicalTrials.gov, http://clinicaltrials.gov, NCT03994731.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae145"},"PeriodicalIF":2.1,"publicationDate":"2024-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11646119/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142829841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Current usage of and perspectives on the use of MRI to assess treatment non-response in axial spondyloarthritis: a UK-based survey.","authors":"Jake Weddell, Timothy J P Bray, Raj Sengupta, Dennis McGonagle, Pedro M Machado, Helena Marzo-Ortega","doi":"10.1093/rap/rkae139","DOIUrl":"10.1093/rap/rkae139","url":null,"abstract":"","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae139"},"PeriodicalIF":2.1,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11645469/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142829837","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pain management in people with inflammatory arthritis: British Society for Rheumatology guideline scope.","authors":"Ian C Scott, Opeyemi Babatunde, Christopher Barker, Rebecca Beesley, Richard Beesley, Hollie Birkinshaw, Mel Brooke, Hema Chaplin, Lara Chapman, Coziana Ciurtin, James Dale, Dervil Dockrell, Emma Dures, Kathyrn Harrison, Meghna Jani, Charlotte Lee, Maura McCarron, Christian D Mallen, Assie O'Connor, Claire Pidgeon, Tamar Pincus, Dee Pratt, Yeliz Prior, Karim Raza, Zoe Rutter-Locher, Seema Sharma, Katie Shaw, Samantha Small, Tilli Smith, Lesley Tiffin, Jordan Tsigarides, Mikalena Xenophontos, Nicholas G Shenker","doi":"10.1093/rap/rkae128","DOIUrl":"10.1093/rap/rkae128","url":null,"abstract":"<p><p>Pain is a common symptom in people with inflammatory arthritis (IA), which has far-reaching impacts on their lives. Recent electronic health record studies demonstrate that UK-based pain care in people with IA commonly involves the prescribing of long-term opioids and gabapentinoids, despite an absence of trial evidence for their efficacy. Patient surveys suggest that non-pharmacological pain management is underused. A UK-specific guideline on pain management for people with IA is required to resolve this. This scoping document outlines the context and prioritized clinical questions for the first British Society for Rheumatology (BSR) guideline on pain management for people with IA. The guideline aims to provide evidence-based recommendations on how pain can be best managed in people with IA (including its assessment, and pharmacological and non-pharmacological treatments), ensuring that people with IA in the UK are offered evidence-based pain management strategies. The guideline is for healthcare professionals involved in the care of people with IA of all ages and genders, people with IA and their families and carers, NHS managers and healthcare commissioners, and other relevant stakeholders such as patient organizations. It will be developed using the methods outlined in the BSR's 'Creating Clinical Guidelines' protocol.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae128"},"PeriodicalIF":2.1,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11573413/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142676780","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The frequency and clinical associations of opioid use in systemic sclerosis.","authors":"Jessica L Fairley, Dylan Hansen, Susanna Proudman, Joanne Sahhar, Gene-Siew Ngian, Diane Apostolopoulos, Jennifer Walker, Lauren V Host, Wendy Stevens, Nava Ferdowsi, Maryam Tabesh, Mandana Nikpour, Laura Ross","doi":"10.1093/rap/rkae144","DOIUrl":"10.1093/rap/rkae144","url":null,"abstract":"<p><strong>Objective: </strong>To define the frequency and associations of opioid use in SSc.</p><p><strong>Methods: </strong>Australian Scleroderma Cohort Study participants meeting ACR/EULAR criteria for SSc were included. Current or previous opioid use was recorded at each visit, with long-term use defined as use on two or more consecutive visits. Groups were compared using two-sample <i>t</i>-test, Wilcoxon rank sum test or chi-squared test. Generalised estimating equations were used to model longitudinal data.</p><p><strong>Results: </strong>Of 1951 participants with a mean age of 46.7 years (s.d. 14.4), 88% were female and 12% had ever received any opioids since SSc onset. Of these, 46% recorded opioid use across multiple consecutive study visits. Digital ulcers (63% <i>vs</i> 52%), synovitis (57% <i>vs</i> 38%), interstitial lung disease (37% <i>vs</i> 27%), gastrointestinal (GI) symptoms (upper 97% <i>vs</i> 88%, lower 90% <i>vs</i> 80%) and immunosuppression (59% <i>vs</i> 46%) were all more frequent in opioid-exposed groups (<i>P</i> < 0.05). In multivariable modelling, current opioid use at each study visit was associated with digital ulcers [odds ratio (OR) 1.5 (95% CI 1.1, 2.0), <i>P</i> = 0.01], synovitis [OR 1.5 (95% CI 1.1, 2.1), <i>P</i> = 0.02], lower GI symptoms [OR 1.8 (95% CI 1.3, 2.6), <i>P</i> < 0.01] and poorer physical [OR 1.8 (95% CI 1.3, 2.4), <i>P</i> < 0.01] and mental [OR 1.8 (95% CI 1.1, 3.0), <i>P</i> = 0.02] quality of life (QoL). Current opioid use was associated with worse fatigue [regression coefficient (RC) 3.0 units (95% CI 1.2, 4.8), <i>P</i> < 0.01], functional disability [RC 0.2 (95% CI 0.2, 0.3), <i>P</i> < 0.01], dyspnoea [RC 2.0 (95% CI 0.8, 3.1), <i>P</i> < 0.01], depression [RC 2.5 (95% CI 0.9, 4.0), <i>P</i> < 0.01] and anxiety [RC 2.5 (95% CI 0.9, 4.0), <i>P</i> < 0.01].</p><p><strong>Conclusions: </strong>Opioid use in SSc was associated with musculoskeletal, GI and lung involvement. Opioid prescription was associated with poorer QoL and physical function.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae144"},"PeriodicalIF":2.1,"publicationDate":"2024-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11634672/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142819033","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Hypereosinophilia and eosinophilic arterial aneurysm: not only eosinophilic granulomatosis with polyangiitis.","authors":"Elena Vanni, Chiara Marvisi, Carlo Salvarani","doi":"10.1093/rap/rkae138","DOIUrl":"10.1093/rap/rkae138","url":null,"abstract":"","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae138"},"PeriodicalIF":2.1,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11630549/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142807917","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Rationale and concerns for using JAK inhibitors in axial spondyloarthritis.","authors":"Saad Ahmed, Rohan Yesudian, Hassan Ubaide, Laura C Coates","doi":"10.1093/rap/rkae141","DOIUrl":"10.1093/rap/rkae141","url":null,"abstract":"<p><p>Axial spondyloarthritis (axSpA) is a chronic illness with limited treatment options. The role of Janus kinase (JAK) inhibition as a therapeutic option has increasingly become a focus of research in recent years as they have brought a new mode of action to the clinical armamentarium. This review assesses the efficacy and safety profile of these drugs in axSpA. The current phase 2 and 3 clinical trials data are summarized across tofacitinib, upadacitinib and filgotinib. Moreover, the safety profiles of these drugs, in the context of emerging safety signals such as during the ORAL surveillance study, are reviewed. In summary, JAK inhibitors offer a novel therapeutic target for axSpA and appear to address some of the unmet needs for patients who have either failed to respond to current treatment options or in whom they are contraindicated. There is a relative lack of evidence in non-radiographic axSpA and longer-term trials are needed to establish true efficacy and safety profile in radiographic axSpA.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae141"},"PeriodicalIF":2.1,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11630911/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142807943","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mobile health applications for individuals with psoriatic arthritis.","authors":"Rami Awad, Tammy Pham, Jackie Stratton, Evan Leibowitz, Daniel H Solomon","doi":"10.1093/rap/rkae142","DOIUrl":"10.1093/rap/rkae142","url":null,"abstract":"<p><strong>Objectives: </strong>Mobile health applications (apps) hold promise as tools for symptom tracking and management of chronic rheumatic diseases such as PsA. Apps for PsA have not been systematically evaluated. We conducted a comprehensive review of apps designed for patients with PsA.</p><p><strong>Methods: </strong>The iOS and Android app stores were searched using the term 'arthritis' and individual app descriptions were reviewed for 'psoriatic arthritis'. Apps were downloaded and rated using the Mobile Application Rating Scale (MARS). Additionally, the apps were evaluated to determine functionality, use of symptom scales and potential for integration within clinical care.</p><p><strong>Results: </strong>The search was conducted in spring 2024 and 130 apps were found that mentioned 'arthritis'. Seven had specific mentions of PsA in their description. We found several other relevant apps by following recommendations in the app stores. In total, 10 apps for patients with PsA were identified. MARS scores suggest they were moderate to excellent in quality. The functionality of the 10 apps differed: 7 allowed for symptom tracking, 3 allowed for data export to health records, 2 allowed for medication tracking and 1 contained a patient community platform. The symptom tracking capabilities varied widely and we could find only one published study of any of the apps.</p><p><strong>Conclusions: </strong>We analysed apps for PsA to identify potential unmet needs and found that there are few publicly available apps, their functionality varies tremendously and testing of these apps is almost non-existent. There appears to be room for improvement of apps for PsA.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae142"},"PeriodicalIF":2.1,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11959179/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143764941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interrater reliability of RheuMetric checklist scales for physician global assessment, inflammation, damage and patient distress.","authors":"Juan Schmukler, Isabel Castrejon, Tengfei Li, Joel A Block, Theodore Pincus","doi":"10.1093/rap/rkae137","DOIUrl":"10.1093/rap/rkae137","url":null,"abstract":"<p><strong>Objective: </strong>To analyse interrater reliability of four RheuMetric checklist 0-10 visual numerical scales (VNSs) of physician global assessment (DOCGL), inflammation or reversible findings (DOCINF), organ damage or irreversible findings (DOCDAM) and patient distress or findings explained by fibromyalgia, depression or anxiety (DOCDIS).</p><p><strong>Methods: </strong>A retrospective study was performed of data from a rheumatology fellows' continuity clinic at Rush University. Each rheumatology patient seen in routine care with any diagnosis completed a multidimensional health assessment questionnaire (MDHAQ). Both the rheumatology fellow and attending rheumatologist independently completed RheuMetric estimates at the same visit for DOCGL, DOCINF, DOCDAM, DOCDIS and the proportion of DOCGL explained by each subglobal estimate (totalling 100%). Agreement between the two assessors was compared using paired <i>t</i>-tests, Spearman correlation coefficients, intraclass correlation coefficients (ICCs), Lin's concordance correlation coefficients (LCCCs) and Bland-Altman plots.</p><p><strong>Results: </strong>In 112 patients, mean levels of DOCINF were highest in inflammatory diseases, DOCDAM in osteoarthritis (OA) and DOCDIS in primary fibromyalgia (FM). However, mean DOCDAM was as high as DOCINF in inflammatory diseases. No statistically significant differences were seen between scores from attending rheumatologists and fellows. Agreement within 2/10 ranged from 60% for DOCGL to 71% for DOICINF and DOCDAM. Spearman correlations were 0.49-0.65, ICCs were 0.46-0.63 and LCCCs were 0.46-0.62 between rheumatologist and fellow, indicating moderate agreement; reliability was slightly higher for each subglobal VNS than for DOCGL.</p><p><strong>Conclusion: </strong>RheuMetric 0-10 DOCGL, DOCINF, DOCDAM and DOCDIS have moderate interrater reliability and are feasible in routine care to estimate patient status beyond DOCGL for improved management decisions.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae137"},"PeriodicalIF":2.1,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11630516/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142807844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"CONTExT-RA: a cross-sectional study evaluating disease activity, quality of life and the socio-demographic profile of Irish patients with rheumatoid arthritis.","authors":"Grainne Murphy, Killian O'Rourke, Angela Camon, David Kane, Finbar O'Shea, Richard Conway, Claire Sheehy, Moneeb Saddiq, Deirdre Moran","doi":"10.1093/rap/rkae132","DOIUrl":"10.1093/rap/rkae132","url":null,"abstract":"<p><strong>Objectives: </strong>CONTExT-RA is a cross-sectional, non-interventional multicentre study which enrolled patients diagnosed with RA and receiving DMARD treatment in a secondary care setting. The study evaluated disease control and associated disease burden amongst this Irish population.</p><p><strong>Methods: </strong>Patients with RA attending six Irish rheumatology centres were invited to participate. Each consented patient attended a single routine study visit. Disease activity was assessed using Clinical Disease Activity Index (CDAI). The primary endpoint was EuroQol-5 dimensions (EQ-5D-5L) stratified by CDAI, compared using a non-parametric Wilcoxon Rank-Sum test.</p><p><strong>Results: </strong>130 patients were included. Using CDAI, 34 (26.2%) patients were in clinical remission (CR), 42 (32.3%) had low disease activity (LDA), 41 (31.5%) had moderate disease activity (MDA) and 13 (10.0%) had high disease activity (HDA). QoL (EQ-5D-5L index (median)) scores were significantly (<i>P</i> < 0.001) greater for patients in CR or CR/LDA than for those with MDA/HDA, 0.866 (0.920), 0.777 (0.822) vs 0.578 (0.691), respectively. Patients in CR reported higher levels of work productivity, mean (s.d.) rating of 1.7 (2.52) vs those in MDA/HDA of 4.2 (3.28) (higher rating indicates greater impairment). Similar findings were observed for non-work-related activities.</p><p><strong>Conclusion: </strong>Disease control for many patients with RA, treated in secondary care in Ireland, is sub-optimal with only 1 in 4 in CDAI remission. The impact of poor disease control on QoL is significant, and the superior outcomes for patients in CR provide compelling evidence that by achieving greater disease control, the burden of disease on patients can be greatly reduced.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae132"},"PeriodicalIF":2.1,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11588026/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142717017","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Recording of non-musculoskeletal manifestations, comorbidities and safety outcomes in European spondyloarthritis registries: a survey.","authors":"Zohra F Ahmadzay, Jette Heberg, Jacob B Jørgensen, Lykke M Ørnbjerg, Mikkel Østergaard, Signe Møller-Bisgaard, Brigitte Michelsen, Anne Gitte Loft, Gareth T Jones, Pasoon Hellamand, Almut Scherer, Michael J Nissen, Karel Pavelka, Jakub Závada, Karin Laas, Sigrid Vorobjov, Dan Nordström, Tuulikki Sokka-Isler, Anne C Regierer, Andreas Reich, Bjorn Gudbjornsson, Katrin Thorarinsdottir, Florenzo Iannone, Ennio Giulio Favalli, Marleen van de Sande, Sella Aarrestad Provan, Tore K Kvien, Ana Maria Rodrigues, Cátia F Gonçalves, Catalin Codreanu, Corina Mogosan, Ziga Rotar, Katja Perdan Prikmajer, Isabel Castrejon, Lucía Otero-Varela, Daniela Di Giuseppe, Johan K Wallman, Adrian Ciurea, Burkhard Möller, Gökçe Kenar-Artın, Tuba Demirci Yıldırım, Gary J Macfarlane, Ovidiu Rotariu, Bente Glintborg, Merete Lund Hetland","doi":"10.1093/rap/rkae135","DOIUrl":"10.1093/rap/rkae135","url":null,"abstract":"<p><strong>Objectives: </strong>Real-world evidence is needed to inform treatment strategies for patients with PsA and axial SpA (axSpA) who have non-musculoskeletal manifestations (NMMs), various risk factors and comorbidities. International collaboration is required to ensure statistical power and to enhance generalizability. The first step forward is identifying which data are currently being collected. Across 17 registries participating in the European Spondyloarthritis Research Collaboration (EuroSpA), we aimed to map recording practices for NMMs, comorbidities and safety outcomes in patients with PsA and axSpA.</p><p><strong>Methods: </strong>Through a survey with 4,420 questionnaire items, we explored the recording practices of 58 pre-defined conditions (i.e. NMMs, comorbidities and safety outcomes) covering 10 disease areas. In all registries we mapped for each condition whether it was recorded, the recording procedure and the potential to identify it through linkage to other national registries.</p><p><strong>Results: </strong>Conditions were generally recorded at entry into the registry and clinical follow-up visits using a pre-specified list or a coding system. Most registries recorded conditions within the following disease areas: NMMs (number of registries, <i>n</i> = 15-16), cardiovascular diseases (<i>n</i> = 10-14), gastrointestinal diseases (<i>n</i> = 12-13), infections (<i>n</i> = 10-13) and death (<i>n</i> = 14). Nordic countries had the potential for data linkage and generally had limited recording of conditions in their registry, while other countries had comprehensive recording practices.</p><p><strong>Conclusion: </strong>A wide range of conditions were consistently recorded across the registries. The recording practices of many conditions and disease areas were comparable across the registries. Our findings support the potential for future collaborative research.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"8 4","pages":"rkae135"},"PeriodicalIF":2.1,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11604170/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142751390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}