[tri-med] Re: TRIS update

>since I completed my survey before Richard died should I go back
>and update it?

Mary,

We did that for you in our presentation figures, but we'll have
you complete a short "Update Survey" for surviving participants,
during our next data collection period.  That survey doesn't exist
yet, but I'm currently working on ideas of areas that need including.
8 so far.

1.) Any changes in contact information?
2.) Is your child still living?  If not date and cause of death.
3.) Any changes in the participant's chromosomal diagnosis?
4.) Any new 2ndary diagnosis (i.e. Wilm's tumor, autism, seizure disorder,
etc)?
5.) Any recent surgeries and outcomes
6.) Any recent drugs prescribed, what for & w/ effects/usefulness.
7.) New therapies & usefulness?
8.) Additions to developmental matrix milestones.

Anyone have any other critical area suggestions?  But remember, I DO
really want to keep this one a short survey!

Fawna, Research coordinator TRIS Project, mom
to Thom & Rhonda, Lara, & Philina 24yrs (PT6p
& Moya Moya Syndrome), Escondido, CA USA
http://home.mindspring.com/~fawna33/



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

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