you are most certainly entitled to not participate in
any studies that hit this list. however, this is not
the cp parents list, while parents are welcomed here,
the list was primarily started as a list of persons
with cp. over the years parents have joined to glen
information from us. also there have joined this list
many of the practicing ot's, pt's, and a few
researchers. when legit, the admins permit studies to
be posted. i have participated in some of the research
myself. some of the research will not help me, but,
just maybe will help your children during their
lifetimes. like i said parents are welcomed, some
practicers of the med field will be welcomed as will
some researchers.
  that is the nature of this particular list server.

--- Cynthia Crosby <[log in to unmask]> wrote:

> Regarding research.
>
> As the parent of a child with cerebral palsy, it is
> significant to emphasize that I participate in  list
> serves
> solely for the sharing of experience with other
> parents.
> Parents sharing with parents is a vital resource
> that should
> not be corrupted from well-meaning clinicians. It is
> critical
> that these list serves be available and comfortable
> sites for
> parents to openly discuss all topics related to a
> cerebral
> palsy without fear of further diagnosis, labelling,
> judgment,
> recrimination, or more unsolicited expertise from
> clinicians.
> For those of us families involved in the service
> system, we
> need a place of safety  from further questioning,
> more
> labels, predictions, prognosis, etc. I do not feel
> it is
> appropriate for a clinician to solicit research
> subjects from
> the list serve.  There are many places to do this
> solicitation.  It is important to  respect the
> integrity of
> the list serve.
> Cynthia Crosby
>




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