Greta,

You have nothing to be sorry about!  You asked our permission, and we gave it
to you. It's not a problem!  I only wish I were eligible for your study.

Kat, List Admin

On Monday 31 January 2005 1:56 am, greta von der luft wrote:
> 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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