Hello,
I am very sorry if I offended or hurt anyone. It was not my intention. I am
a strong advocate for children with disabilities. I have been told this by
many parents of children that I treated. Because I respect the rights of
families and children with disabilities, I asked the moderators of the
listserv for permission to post the email. The permission was granted from
the moderators. I would never include anything in my dissertation research
from this listserve without prior permission of the individual or the
listserv itself.

My research is fully approved by Temple University's Institutional Review
Board (IRB), so it is quite legit.  Moreover, Temple University's IRB, which
protects the rights of all participants in research, requires informed
consent and informed assent forms to be generated by all researchers. These
forms are approved by the IRB only if they adequately protect the rights,
privacy, and confidentiality of the research participants. Additionally, the
IRB will only approve the research if the research protocol is safe,
farthers the knowledge of the topic in question, benefits the participants,
and society at large. So, I as an individual and as a researcher governed by
an IRB would respect the rights all participants.

I was merely trying to introduce myself as PhD Candidate, my research, and
to see if any parents of children with CP were interested in contacting me
to learn more about my study and potentially participate through the
listserv. The actual data collection or research would only begin after I
would meet with the participants, explained the study, and had informed
consent forms and informed assent forms signed by the parent and child and
not before. Again I am sorry for any ill will that my email caused.
Sorry,

Greta von der Luft BS, MSPT, MEd, PhD Candidate





>From: ken barber <[log in to unmask]>
>Reply-To: "St. John's University Cerebral Palsy List"
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: Research studies
>Date: Sun, 30 Jan 2005 15:36:33 -0800
>
>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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