Under normal circumstances, this thread which is PD related would have ended
for lack of inertia a while ago (interestingly, unlike many non PD threads
which seem to go on ad infinitum ad nauseum). However, new names are entering
the discussion daily indicating to me at least, that there is some perceived
value in the discussion.

I made my views on this study known a long time ago; and those are that it
appears not to have any downside and the upside is enormous if it proves to
work on any level....slowing the disease, stopping it or reversing it. once
the thinking progresses that far, it only remains to decide if one has the
time and the resources to participate.
I've said that before as well without explaining what participation actually
entails in terms of time and resources, so I will devote this post to those
aspects of participation, dropping some additional bits of information along
the way.

Once you apply, the study team will call for your PD medical records. All
this is done by phone, mail, e-mail. Using criteria to which I am not privy,
applicants are chosen (or not) to come to Philadelphia to be interviewed and
if accepted, to take various tests to establish a baseline against which
future tests are measured. Two separate days, usually one week apart are
required to establish the baseline and as long as these two results are
relatively similar, the baseline is considered established. If not, ten a
third visit is required and the two closest tests out of the three are
averaged in some way to create the baseline. once this baseline is
established, one more visit is required to establish a baseline for the SPECT
scan which used to be performed at UPenn in Philadelphia but will now be
performed at an as yet unnamed site, perhaps Johns Hopkins in Baltimore. I
tried to talk them into Yale, only 1/2 hour from me, to no avail. In lay
terms (all I'm capable of), the SPECT scan counts the neurons in the brain
(please do not quibble with my description too much if anybody out there
knows better, but feel free to clarify if necessary) and once a baseline is
established, it is obvious that subsequent scans will tell us something. So
to recap. After paperwork, it takes a minimum of three visits to
Philadelphia, or two to Philadelphia and one to an unnamed place to get
established in the program.

The program is a randomized, placebo controlled, double blind trial, which
contrary to a previous statement I made is a phase II (not phase III) trial.
For the first 6 months, a participant, based upon random selection
(randomized), will get either drug or placebo (placebo controlled), and
neither the participant nor the administrators will know who is getting what
(double blind). The drug is a liquid which is self administered twice daily
subcutaneously by syringe. At first, the syringe looks and feels like a
marlin pike but one actually becomes accustomed to it in short order. This
first phase lasts 6 months and during that 6 months, you visit Philadelphia
every six weeks at which time blood is drawn for testing (side bonus: you get
to know cholesterol levels on a regular basis) and two Drs., Dr. Schneider
and Dr. Mancoll, a neurologist put each participant through the typical
physical diagnostic tests and one of the staff does cognitive testing with
props and computer programs.

So that means four more visits to Philadelphia during the first 6 month
period plus a visit somewhere at the end of the period for a SPECT scan.

Thereafter, it's open-label (guaranteed to get the drug) for the next year
and a half 0r two years depending on what was given during the first six
months. Each participant is guaranteed 2 full years on real drug. During the
2nd six months, the visits to Philadelphia are three months apart and blood
test are done monthly at your local testing facility with all necessary
paraphernalia and fees, handled by the study.

After a year, visits are reduced to one every six months, keeping in mind the
additional visit for SPECT scans at each 6 month anniversary of entry into
the study.

I just completed one year so my next visit will be in 6 months. I am
fortunate in that I like to drive and that Philadelphia is only 2 1/2 hours
away from me by car. Parking is provided free.

So when I say time and resources I mean over time, between 10 and 15 visits
to Philadelphia (Parkinson and SPECT combined) and the financial ability to
get there and stay over if necessary if coming from afar.

Once again, anyone who wants the study research paper need only send their
fax # or mailing address.

Paul H, Lauer

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