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LInda I'm sure you have thought about this already, but wouldn't the names be subject to a Freedom of Info request since the trial was sanctioned by a gov't agency. I assume that Amgen is not providing them due to HIPPA. But has that been challenged in court due to an overriding concern for the benefit of the patient. Bob -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]]On Behalf Of [log in to unmask] Sent: Thursday, August 24, 2006 8:12 PM To: [log in to unmask] Subject: Looking for participants in GDNF trial - can you help? I am asking list members for help in locating participants in the phase II GDNF trial, 2003-2004. We are especially hoping to find partcipants from the Toronto area. These folks could hold one of the keys to resolving one of the most controversial science questions in the Parkinson's community. You may be aware that this controversy has been going on since the GDNF trial was halted by Amgen two years ago in September 2004. Many of the participants had benefited greatly from this treatment and were devastated by the halt. The researchers are in disagreement about it, but slowly more and more researchers are agreeing that the Amgen's Phase II trial results were inconclusive, not negative as originally stated and that further research on pump infusion delivery of GDNF should proceed. There are Phase II trial participants who still have their equipment in, hoping for it to be reinstated. These participants and other parkinson's advocates have been trying to convince Amgen to repeat the trial, and provide compassionate use to the original participants. WHY are so many patients so adamant about resuming GDNF trials? Many of the trial participants say it saved their lives. Besides improving symptoms it is neuro-restorative and neuro-protective. For PWP with moderate or advanced PD, GDNF may currently be our best hope for the future. Stem cell therapy is very promising, but is many years away and so is gene therapy, while GDNF which could have been in phase III clinical trials by now, sits on the shelf at Amgen instead. If you know someone who was in this trial or if you belong to a support group in Ontario or know others who do,please forward this information to them. Perhaps one of their members was in this trial and would fill out a profile about their trial experience on the Grassroots Connection website. THEY CAN FILL IT OUT ANONYMOUSLY AND DO NOT HAVE TO LIST THEIR TRIAL CENTER. We would like to show Amgen how the treatment and trial halt affected real people. Their experiences tell far more that statistics ever will. GRC website: http://grassrootsconnection.com here are the trial participant profiles received so far: http://grassrootsconnection.com/gdnf_profiles2006/participants.htm here is the profile form to fill out: http://grassrootsconnection.com/GDNF_profile2006.htm here is the history since the halt: http://grassrootsconnection.com/grcissue_GDNF_research.htm http://pdpipeline.org/yy_advocacy/opeds.htm#_Believe_ excellent summary! much more also on this site trial participant site: http://gdnf4parkinsons.org/ Please contact me if have questions or want more information. Thanks, Linda Herman ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn