Re: Experiences of Living with CMT Survey.

[Guest guest]

Let's see ....

I go to bed with this disease; I wake up with this disease; I eat, dress and

bathe with this disease; I go out the front door, and it's there; I come home,

and it's there. blah, blah, blah.

That pretty well sums up my 'experience' with CMT.

Best wishes with your research.

>

> Greetings everyone.

>

> I am based in London UK and I am conducting research concerning how people

experience living with CMT. This research is for anyone around the world with

CMT who can complete the survey. Please follow the link below to take part

>

>

> http://www.smart-survey.co.uk/v.asp?i=32726frowi

>

>

>

> I would like to invite you to take part in our research study. Before you

decide we would like you to understand why the research is being done and how it

involves for you. Please read through this information before you decide to take

part. We also suggest that you talk to friends, family, colleagues or GP about

this study. Also, if any part of this information requires clarification or you

require more information about the research study please contact us.

>

> What is the purpose of the study?

> The purpose of this study is to gain a clearer and a broader understanding of

the experiences of individuals living with Charcot Marie Tooth Disease. There is

currently very little psychological research exploring the many different

aspects of living with CMT.

>

> Why have I been chosen?

> You are suitable for this study because you have CMT Disease. We aim to

distribute the questionnaire to approximately 100 people, who are 18+ to gain a

broader understanding of their experiences of living with CMT.

>

> Do I have to take part?

> No, your participation is entirely voluntary and you are free to withdraw at

any time, without giving a reason.

>

> What will happen if I take part?

> If you decide to take part you will be asked to complete a questionnaire,

either online or on paper. The questionnaire will take approximately 20 minutes

to complete and there are no right or wrong answers. The survey consists of 3

entirely different questionnaires which have been merged to create this specific

survey. When completing the survey, some questions may be or may seem slightly

repetitive or irrelevant to CMT disease; however, all items are relevant and

should only be answered in relation to your CMT condition.

>

> Will my taking part be kept confidential?

> Absolutely. The data collected from questionnaire, whether online or on paper

will only be accessed by authorised persons from the university. You will not be

asked to give any personal details and participation is anonymous.

>

> Who has organised and reviewed this research?

> This research is part of my work for my MSc Health Psychology degree and has

been reviewed by the Thames Valley University Ethics Committee.

>

> If anyone has any questions of comments about the survey or if it doesn't work

then I encourage and welcome them to either leave me a message here or email me.

>

> Thank you all very much

>

> Kind Regards,

> Krishna

>