Entire Transcript in Adobe Acrobat Format - National Reference ...

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(Slide.)
Now we dealt with clinical samples, samples
taken in clinical practice, and we dealt with some of the
practical issues. So the approach that I am going to be
presenting compliments to some extent the approach that you
just heard earlier.
Let me talk about what we decided to do because
of the quagmire that we found ourselves in when we took on
this issue. One, we limited ourselves to prospective
collection because retrospective collection we felt as a
starting point was going to be a very difficult starting
point.
We were most concerned with samples taken in
routine clinical practice because many samples that are
available for research are those samples held by individual
pathologists who may or may not be affiliated with a
research institution and we -- this program motivated by
patients and advocates -- were very interested in ensuring
that the role of the tissue donor was seen as an active
role and a role of a partner. We wanted to develop user
friendly -- a user friendly consent process, not just a
document, that was going to be meaningful to both patients
and researchers and we were looking to standardization
because we believe standardization will facilitate research