[tri-med] TRIS project update

Happy holidays to everyone!!
I thought it was time for a TRIS project update:

We have 110 completed surveys, thanks so much to everyone! If you 
have started your survey and/or know other parents who have, we 
encourage you to complete remaining parts as soon as you are able. 
The more data we have, the more we can analyze and move forward in 
our efforts to share information about your children with families 
and professionals.

There will be an article about the pilot study of the TRIS Survey 
that will be published online in the American Journal of Medical 
Genetics before the end of the year and the hard copy  will be 
available sometime in February 08. The title is Pregnancy and birth 
history of newborns with Trisomy 18 or 13: A pilot study . Thanks 
again to the parents who participated in that phase of the project.

On February 1st, we will launch the TRIS Follow-up Survey for parents 
who completed the full version of the TRIS Survey since February 07. 
We intend for the project to continue collecting data for the 
purposes of learning more about treatments, medical conditions, 
educational services, developmental milestones, etc. The TRIS 
Follow-up Survey is a combination of Parts II and III of the full version.

We are working on an outreach packet to send to professionals in the 
field of perinatal hospice, developmental pediatricians, etc. We hope 
to recruit additional families to participate in the project in this way.

The TRIS project has also received additional funding from SOFT and 
Hope for Trisomy 13 and 18, thanks so much for your support. In 
addition, the TRIS project received funding to purchase a digital 
camera earlier this fall from a research competition at Southern 
Illinois University. We will use the digital camera in preparing our 
outreach packet, document conferences we attend and similar aspects 
of the project.

Finally, I am preparing a number of proposals to submit to 
organizations to present information about the TRIS project and our 
initial findings. Right now, I am focusing on the American Academy 
for Cerebral Palsy and Developmental Medicine. Their conference will 
be in September in Atlanta. In addition, I am working on a manuscript 
of an article to submit to the journal Neonatal Network focusing on 
the early experiences of children with full trisomy 18.

Again, happy holidays and best of everything for the New Year.

Debbie Bruns

_____________________________________________________________
Deborah A. Bruns, Ph.D.
Department of Educational Psychology and Special Education
Southern Illinois University Carbondale
Mailcode 4618
Carbondale, IL 62901

Phone: (618) 453-2311
Fax:     (618) 453-7110
E-mail: dabruns@xxxxxxx
Web: http://www.siu.edu/departments/coe/epse/HTMLdocs/speced.htm
TRIS project: http://www.coehs.siu.edu/tris
____________________________________________________________  

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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