Objective: To assess parentsââ?¬â?¢ opinions about their participation in the longitudinal, multicenter study - The\r\nEnvironmental Determinants of Diabetes in the Young (TEDDY) consortium.\r\nMethods: A survey was given to parents who had been in the study for = 1 year. Parents rated the importance\r\nof different reasons for staying in TEDDY and how well different study components were working. Parents were also\r\nasked if they had suggestions for making TEDDY better and if they ever had thought of leaving TEDDY and if so,\r\nwhy.\r\nResults: Out of the 3336 eligible families, 2000 completed the survey (59.1%); most (77.6%) were mothers.\r\nSurvey completion was more common in European than US TEDDY sites and was associated with greater maternal\r\neducation, more accurate perceptions about their childââ?¬â?¢s risk of type 1 diabetes, longer participation in TEDDY and\r\nexcellent attendance at TEDDY visits. ââ?¬Å?Having someone watching the child for development of T1DMââ?¬Â was most\r\nimportant reason given for staying in the study; other important reasons included ââ?¬Å?Helping science discover causes\r\nof diabetesââ?¬Â and ââ?¬Å?Getting childââ?¬â?¢s antibody resultsââ?¬Â. Most parents were very satisfied with the different components\r\nof TEDDY and had not thought of leaving the study. A minority (24%) of parents acknowledged some thoughts of\r\nleaving TEDDY and cited the blood draws, being too busy/not having enough time, the demanding protocol, and food\r\ndiaries as their reasons for considering leaving.\r\nConclusions: The study highlights factors important for successful implementation of demanding, longitudinal\r\nprotocols. Friendly, devoted, skilled and knowledgeable staff with continuity makes the family comfortable. Keeping\r\nparents involved and informed on study progress is essential as is making procedures as smooth and painless as\r\npossible. Although the study is international the survey results were convergent across countries suggesting that the\r\nresults have relevance to other similar studies to retain study participants.
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