{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T16:57:46Z","timestamp":1792083466830,"version":"4.4.0"},"reference-count":62,"publisher":"Oxford University Press (OUP)","license":[{"start":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T00:00:00Z","timestamp":1788825600000},"content-version":"am","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Participants who continue across the full duration of longitudinal studies often differ from those lost to attrition, defined as discontinuing participation for any reason, and some participants may sporadically miss assessments. Complex participation patterns, such as in multicenter chronic disease cohorts, have not been studied. We aimed to implement an approach to identify participation subgroups and factors associated with these. We applied our approach in the Scleroderma Patient-centered Intervention Network Cohort, a multicenter, longitudinal systemic sclerosis cohort, because it is an example of an open-ended cohort with no planned end date and complex participation patterns. We used group-based trajectory modeling to identify participation subgroups and multinomial logistic regression to identify predictors of subgroup membership. Data were obtained for 2883 participants from 54 sites in 7 countries. We identified 5 participation subgroups: Ongoing Participation (29%), Immediate Attrition (29%), Mid-Term Attrition (19%), Long-Term Attrition (12%), and Ongoing Sporadic (11%) participation. Older age and sites outside the United States were associated with lower odds of belonging to all subgroups other than Ongoing Participation. Compared to Ongoing Participation, several sociodemographic variables were associated with higher odds of being in the Immediate Attrition group. Our method can be applied to other cohorts with complex participation patterns.<\/jats:p>","DOI":"10.1093\/aje\/kwag217","type":"journal-article","created":{"date-parts":[[2026,9,5]],"date-time":"2026-09-05T13:51:30Z","timestamp":1788616290000},"source":"Crossref","is-referenced-by-count":0,"title":["Patterns of cohort participation among people with systemic sclerosis in an open cohort: a Scleroderma Patient-centered Intervention Network Cohort study"],"prefix":"10.1093","author":[{"given":"Meira","family":"Golberg","sequence":"first","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5189-3350","authenticated-orcid":false,"given":"Marie-Eve","family":"Carrier","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Kwakkenbos","sequence":"additional","affiliation":[{"name":"Department of Clinical Psychology, Behavioural Science Institute, Radboud University , Nijmegen ,","place":["the Netherlands"]},{"name":"Centre for Mindfulness, Department of Psychiatry, Radboud University Medical Center , Nijmegen ,","place":["the Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9755-2490","authenticated-orcid":false,"given":"Susan J","family":"Bartlett","sequence":"additional","affiliation":[{"name":"Department of Medicine, McGill University , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]},{"name":"Research Institute of the McGill University Health Centre , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Fortun\u00e9","sequence":"additional","affiliation":[{"name":"Ottawa Scleroderma Support Group , Ottawa, Ontario ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Gietzen","sequence":"additional","affiliation":[{"name":"Steffens Scleroderma Foundation , Albany, NY ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen","family":"Gottesman","sequence":"additional","affiliation":[{"name":"National Scleroderma Foundation , Los Angeles, CA ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Genevi\u00e8ve","family":"Guillot","sequence":"additional","affiliation":[{"name":"Scl\u00e9rodermie Qu\u00e9bec , Longueuil, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen D","family":"Mayes","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, University of Texas McGovern School of Medicine , Houston, TX ,","place":["United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Richard","sequence":"additional","affiliation":[{"name":"Scleroderma Atlantic , Halifax, Nova Scotia ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen","family":"Sauv\u00e9","sequence":"additional","affiliation":[{"name":"Scleroderma Canada , Hamilton, Ontario ,","place":["Canada"]},{"name":"Scleroderma Society of Ontario , Hamilton, Ontario ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robyn K","family":"Wojeck","sequence":"additional","affiliation":[{"name":"Amgen Inc. , Thousand Oaks, CA ,","place":["United 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Qu\u00e9bec ,","place":["Canada"]},{"name":"Department of Epidemiology, Biostatistics, and Occupational Health, McGill University , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]},{"name":"Respiratory Epidemiology and Clinical Research Unit, McGill University Health Centre , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5644-8432","authenticated-orcid":false,"given":"Brett D","family":"Thombs","sequence":"additional","affiliation":[{"name":"Lady Davis Institute for Medical Research, Jewish General Hospital , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]},{"name":"Department of Medicine, McGill University , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]},{"name":"Department of Epidemiology, Biostatistics, and Occupational Health, McGill University , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]},{"name":"Department of Psychiatry, McGill University , Montr\u00e9al, Qu\u00e9bec 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