Re: Research Survey for mDs

[Guest guest]

Kristy, The link did not work for me. Do you have another link?

>

> Hi allWe received a great survey that will help us all better understand mDs.

It is a short survey that will only take a few minutes to answer and

is anonymous. Please read below the information about this research and click

or copy and paste the link at the end of the letter to get to the survey. 

> Thanks all for your help!

>

> Kristy Colvin

> IMDSA Past-President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> Mosaic Down

> Syndrome (mDs) Survey

>

>             The

> aim of this study is to survey parents or caregivers who have children with

> mDs. The survey will collect information about how, why and when these

children

> were diagnosed, their past medical history and parent’s or caregiver’s

> experience of parenting a child with mDs. This research project hopefully will

> help to further educate parents or caregivers of children with mosaic Down

> syndrome (mDs) and professionals who may come in contact with these

individuals

> throughout their career.

>

>             Participation

> in this research study is voluntary and participation may be discontinued at

> any time without penalty and all data will be discarded. The results of this

> survey are confidential and anonymous. Minimal risk is anticipated for

participating

> in this research study. Any returned survey is an indication of consent to use

> the data that is provided. The collected surveys will be kept in a locked file

> cabinet in the office of Dr. Belsterling located at room # 294 Hall on

> the campus of California University of Pennsylvania.

>

>             The

> California University of Pennsylvania Institutional Review Board has approved

> this research study. This approval is effective 03/17/2010 and expires

> 03/17/2011.

>

>             Contact

> information of the researcher and the faculty advisor is provided below and

can

> be contacted at any time with comments, questions or concerns.

>

> Thank you in

> advance for your participation in this mDs research survey.

>

> Researcher contact information:

                                    Faculty

advisor

> contact information:

>

> Name: Amelia Straub

                                    Name: Dr.

> Ralph Belsterling

>

> Phone number:                         

Phone number:

>

> Email Address:

Str6381@...                                Email

Address:                  belsterling@...

>

>  

>

> http://www.surveymonkey.com/s.aspx?sm=ChzIAtixmFgMLcqav5HzMQ_3d_3d

>

>

[Guest guest]

,

We also have place it on the IMDSA website. It's on the first page, and under

the research tab.

Here is the link again.

http://www.surveymonkey.com/s.aspx?sm=ChzIAtixmFgMLcqav5HzMQ_3d_3d

Hellard

IMDSA President

brandy@...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

Subject: Re: Research Survey for mDs

To: MosaicDS

Date: Tuesday, March 30, 2010, 8:34 PM

 

Kristy, The link did not work for me. Do you have another link?

>

> Hi allWe received a great survey that will help us all better understand mDs.

It is a short survey that will only take a few minutes to answer and

is anonymous. Please read below the information about this research and click

or copy and paste the link at the end of the letter to get to the survey. 

> Thanks all for your help!

>

> Kristy Colvin

> IMDSA Past-President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

>

> Mosaic Down

> Syndrome (mDs) Survey

>

>             The

> aim of this study is to survey parents or caregivers who have children with

> mDs. The survey will collect information about how, why and when these

children

> were diagnosed, their past medical history and parent’s or

caregiver’s

> experience of parenting a child with mDs. This research project hopefully will

> help to further educate parents or caregivers of children with mosaic Down

> syndrome (mDs) and professionals who may come in contact with these

individuals

> throughout their career.

>

>             Participation

> in this research study is voluntary and participation may be discontinued at

> any time without penalty and all data will be discarded. The results of this

> survey are confidential and anonymous. Minimal risk is anticipated for

participating

> in this research study. Any returned survey is an indication of consent to use

> the data that is provided. The collected surveys will be kept in a locked file

> cabinet in the office of Dr. Belsterling located at room # 294 Hall on

> the campus of California University of Pennsylvania.

>

>             The

> California University of Pennsylvania Institutional Review Board has approved

> this research study. This approval is effective 03/17/2010 and expires

> 03/17/2011.

>

>             Contact

> information of the researcher and the faculty advisor is provided below and

can

> be contacted at any time with comments, questions or concerns.

>

> Thank you in

> advance for your participation in this mDs research survey.

>

> Researcher contact information:

                    \

                Faculty advisor

> contact information:

>

> Name: Amelia Straub

                    \

                Name: Dr.

> Ralph Belsterling

>

> Phone number:

                    \

     Phone number:

>

> Email Address:

Str6381@...                 Ã\

‚ Â Â Â Â Â Â Â Â Â Â Â Â Â  Email Address:    

             belsterling@ ...

>

>  

>

> http://www.surveymo nkey.com/ s.aspx?sm= ChzIAtixmFgMLcqa v5HzMQ_3d_ 3d

>

>