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TR000064"]}],"id":[{"id":"10.13039\/100007493","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007493","name":"University of Colorado Boulder","doi-asserted-by":"publisher","award":["UL1 TR001082"],"award-info":[{"award-number":["UL1 TR001082"]}],"id":[{"id":"10.13039\/100007493","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Diabetes Research"],"published-print":{"date-parts":[[2016]]},"abstract":"<jats:p><jats:italic>Background<\/jats:italic>. To characterize participant reasons for withdrawing from a diabetes focused longitudinal clinical observational trial (TEDDY) during the first three study years.<jats:italic>Methods<\/jats:italic>. 8677 children were recruited into the TEDDY study. At participant withdrawal staff recorded any reason parents provided for withdrawal. Reasons were categorized into (1) family characteristics and (2) protocol reasons. Families who informed staff of their withdrawal were classified as active withdrawals (AW); families without a final contact were considered passive withdrawals (PW).<jats:italic>Results<\/jats:italic>. Withdrawal was highest during the first study year<mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\" id=\"M1\"><mml:mo stretchy=\"false\">(<\/mml:mo><mml:mi>n<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>1220<\/mml:mn><mml:mo stretchy=\"false\">)<\/mml:mo><\/mml:math>. Most families were AW (<mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\" id=\"M2\"><mml:mi>n<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>1549<\/mml:mn><\/mml:math>; 73.4%). PW was more common in the United States (<mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\" id=\"M3\"><mml:mi>n<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>1001<\/mml:mn><\/mml:math>; 37.8%) and among young mothers<mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\" id=\"M4\"><mml:mo stretchy=\"false\">(<\/mml:mo><mml:mi>p<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>0.001<\/mml:mn><mml:mo stretchy=\"false\">)<\/mml:mo><\/mml:math>. The most frequent protocol characteristic was blood draw (55%) and the most common family reason was not having enough time (66%). The blood draw was more common among female participants; being too busy was more common among males. Both reasons were associated with study satisfaction.<jats:italic>Conclusions<\/jats:italic>. Results suggest that, for families of children genetically at risk for diabetes, procedures that can be painful\/frightening should be used with caution. Study procedures must also be considered for the demands placed on participants. Study satisfaction should be regularly assessed as an indicator of risk for withdrawal.<\/jats:p>","DOI":"10.1155\/2016\/2720650","type":"journal-article","created":{"date-parts":[[2015,11,22]],"date-time":"2015-11-22T16:01:19Z","timestamp":1448208079000},"page":"1-13","source":"Crossref","is-referenced-by-count":10,"title":["Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing"],"prefix":"10.1155","volume":"2016","author":[{"given":"Barbro","family":"Lernmark","sequence":"first","affiliation":[{"name":"Department of Clinical Sciences, Lund University, CRC, Jan Waldenstr\u00f6ms Gata 35, Sk\u00e5ne University Hospital (SUS), 20502 Malm\u00f6, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristian","family":"Lynch","sequence":"additional","affiliation":[{"name":"Health Informatics Institute, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL 33612, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Judith","family":"Baxter","sequence":"additional","affiliation":[{"name":"Barbara Davis Center for Childhood Diabetes, School of Medicine, University of Colorado Denver-AMC, 1775 Aurora Court, Aurora, CO 80045, USA"},{"name":"Colorado School of Public Health, Department of Community and Behavioral Health, University of Colorado Denver-AMC, 13001 E. 17th Place, Aurora, CO 80045, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Roswith","family":"Roth","sequence":"additional","affiliation":[{"name":"Institute of Diabetes Research, Helmholtz Center Munich and Clinic on the right of Isar, Technical University Munich, Research Group Diabetes e.V., Ingolstaedter Landstrasse 1, 85764 Neuherberg, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tuula","family":"Simell","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Turku, Kiinamyllynkatu 4-8, 20100 Turku, Finland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura","family":"Smith","sequence":"additional","affiliation":[{"name":"Health Informatics Institute, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL 33612, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulrica","family":"Swartling","sequence":"additional","affiliation":[{"name":"Department of Clinical Sciences, Lund University, CRC, Jan Waldenstr\u00f6ms Gata 35, Sk\u00e5ne University Hospital (SUS), 20502 Malm\u00f6, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suzanne Bennett","family":"Johnson","sequence":"additional","affiliation":[{"name":"Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, 1115 West Call Street, Tallahassee, FL 32306, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"TEDDY Study 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