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DRD and AW designed and planned the research, participated in design of the questionnaires, selected facilities for the study, analyzed the data, and drafted the manuscript.
When the 2000 cohort was surveyed one year following qualification, this statement was included in only 25% of the questionnaires (selected at random).
TA, LG, JN, HT, CO and PW commented on the design of the questionnaires, selected facilities to survey in their respective countries, helped train data collectors and carried out the survey and assisted in the analysis of the data from their countries.
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The questionnaire selected for this study needed to be fairly brief, understandable and easy to complete.
In order to capture the specific outcome variables of interest for this study and to limit the length of the questionnaire, selected items from these surveys were chosen to create a new 16-item, 5-point Likert scale questionnaire ranging from strongly agree (5) to strongly disagree (1).
The two validated questionnaires selected that pertain to male and female urinary symptoms are gender specific variations of the ICIQ-MLUTS (male) and ICIQ-FLUTS (female).
The QOL questionnaire selected for this investigation, the PKU-QOLQ, was developed to evaluate QOL parameters specific to the experience of living with PKU.
The questionnaires were selected from among those most commonly used to evaluate symptoms of fibromyalgia, and the principal variables related to this syndrome.
Data from the questionnaires and selected laboratory testing outcomes were merged, checked for quality, and analyzed by using Stata version 9.0 (StataCorp LP, College Station, TX, USA).
Recall of diet was assessed by a modification of the Block questionnaire, selecting for foods higher in fat and fiber.
For centres where the full ASQ was not thought feasible for cultural or language reasons, we shortened the questionnaires by selecting the questions considered most likely to predict severe developmental delay.
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