Research into Down syndrome from the University of Newcastle, Australia

[Guest guest]

 To Whom it May Concern,

My name is Jane Goodwin and I am a student researcher at the University of

Newcastle, Australia. Currently, I am working with Dr (chief

investigator) on an investigation into parents' and caregivers' experiences

regarding the diagnosis of Down syndrome. Specifically, we are interested in the

diagnosis experience, how the children were told, and coping methods used. We

are also looking at caregivers' and parents' concerns around telling their

children about the syndrome. This project has ethics approval from the

University of Newcastle's Human Research Ethics Committee. Approval No.

H-2012-0129.

To investigate this, a 20 – 30 minute questionnaire has been created which can

be found at www.wix.com/c3094005/geneticdisorders. We hope that the results of

the study will provide a better insight into the parental disclosure process and

that this in turn will improve healthcare models and processes associated with

the care relating to this syndrome.

I am approaching you as the contact found at the Down Syndrome Guild of Greater

Kansas City to ask if I (or you) would be able to put up links to our study

website (www.wix.com/c3094005/geneticdisorders) on your Facebook group wall

and/or on your website in order to recruit participants. We are seeking people

18 and over who are either a parent or a caregiver of an individual with Down

syndrome.

If you have any questions or concerns, please contact myself

(c3094005@...) or Dr (.E.@...).

Thank you for considering this request,

Jane Goodwin and   

Hellard

President

International Mosaic Down syndrome Association (IMDSA)

P.0. Box 354~ Trenton ~ OH ~ 45067

1-888-MDS-LINK ~ 1- ~ (FAX) 1- 

http://imdsa.org