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The questionnaire started with the following: "I have read and understood the attached information sheet and agree to participate in this study".
The contact at each university sent emails with attached information sheet and consent form to the post graduate students in their faculty and asked them to return a signed consent if they wished to volunteer for an interview.
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The PerLR will be informed about the trial by the responsible clinician or a member of the research team and provided with a copy of the covering statement for PerLR with an attached PerLR information sheet and asked to give an opinion as to whether the patient would object to taking part in such medical research.
Each questionnaire was attached to an information sheet with a stamped addressed envelope.
The study has never been rejected due to problems related with the documentation attached, such as patient information sheet, financial report, etc., which, however, generate many clarifications with the subsequent increase in administrative work.
All clinicians received a letter of invitation and participant information sheet attached to the email.
Patients' demographic and disease-related data was obtained by a questionnaire attached to the patient information sheet.
Patients' demographic-, disease- and treatment-related data were obtained from a questionnaire attached to the patient information sheet and the consent form.
Opt-out consent was obtained from all participants and their parents/guardians either verbally or by using a form that was attached to the study information sheet.
The most common methods of communication of NBS information, as recalled by the participants, were conversations with a health-care professional (69%) and the tear-off information sheet attached to the NBS blood-spot collection card (68%).
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com