Survey for College of Wooster student

[Guest guest]

Hello everyone, my name is Ed Rezny. I am a senior at the College of

Wooster - located in Midwest Ohio. I am a Communication Sciences and

Disorders major, currently applying to graduate schools to receive my

Master's in Speech-Language Pathology. The College of Wooster all

seniors must write a Senior Independent Study Thesis in order to

graduate. For my Senior IS, I am evaluating how parents and guardians

raising at least one child with CHARGE syndrome use and perceive

online support groups for CHARGE syndrome. I am in the process of

having my questionnaire approved by the college. After my

questionnaire is approved, I will be creating an online version for

parents and guardians of a child with CHARGE syndrome to respond to.

There are no foreseeable risks involved in completing the survey, and

complete anonymity will be preserved as there is and will never be any

type of identifying information asked on the questionnaire. I am

hopeful that the survey will be available online within the next

couple of weeks. After completion of the study, if any participants

are interested in the findings I can email them to that individual.

Please keep an eye out for the survey link. Thank you

[Guest guest]

SOunds interesting Ed!

>

> Hello everyone, my name is Ed Rezny. I am a senior at the College of

> Wooster - located in Midwest Ohio. I am a Communication Sciences and

> Disorders major, currently applying to graduate schools to receive my

> Master's in Speech-Language Pathology. The College of Wooster all

> seniors must write a Senior Independent Study Thesis in order to

> graduate. For my Senior IS, I am evaluating how parents and guardians

> raising at least one child with CHARGE syndrome use and perceive

> online support groups for CHARGE syndrome. I am in the process of

> having my questionnaire approved by the college. After my

> questionnaire is approved, I will be creating an online version for

> parents and guardians of a child with CHARGE syndrome to respond to.

> There are no foreseeable risks involved in completing the survey, and

> complete anonymity will be preserved as there is and will never be any

> type of identifying information asked on the questionnaire. I am

> hopeful that the survey will be available online within the next

> couple of weeks. After completion of the study, if any participants

> are interested in the findings I can email them to that individual.

> Please keep an eye out for the survey link. Thank you

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Hi Ed

I know that you have contacted Carol in the UK. I co run the group

here. Regarding your questionnaire, have you sought approval of the research

committee of the CHARGE Syndrome Foundation? You are more likely to get

particpation from parents on the listserv if it comes with their approval

not only that greter weight wil be attached to the results.

Individually and from a support group perspective the results will be of

interest to me.

Regards

Simon (UK)