Thank you for agreeing to take part in the survey. The aim is to identify the most important outcomes that should be reported by reserach studies of head, neck and respiratory disease in MPS II (a 'core outcome set'). This survey is for outcomes relating to patients aged 12-25 years old.
There are two rounds to the survey. We will contact you when round 2 is ready to complete.
Please set aside 30 minutes to complete this survey.
Please make sure you have read the revelant 'participant information sheet' before completing the survey.
Your consent to take part
By completing and registering your details, you confirm the following:
I confirm I have read and understood the participant information sheet dated 11 Feb 2020 (version 1.1) for the COHERE study.
I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason, without my medical care or legal rights being affected.
I understand that there are 2 rounds of the survey and that I agree to be contacted to take part in round 2.
I agree to be contacted about the results of the study.
I agree to be contacted to take part in future stages of the COHERE study.
I understand that relevant sections of data collected during the study may be looked at by responsible individuals from the University of Manchester, from regulatory authorities or from Manchester University NHS Foundation Trust, where it is relevant to my taking part in the research. I give permission for these individuals to have access to this data.
If you agree with these statements please register to take part in the study.