Dear listmembers,
Biotech giant Amgen Inc. continues to deny GDNF research participants
further treatment.
Please read the Pipeline Project's GDNF update and take action to help
your fellow PWPs. http://pdpipeline.org/focus_updates.htm
This may seem like an unlikely time to encourage more PWPs to volunteer
for clinical trials, but our participation is still critically important
for discovering better treatments and someday a cure for Parkinson’s. We
need reliable sources of information on what trials are currently
recruiting participants, and we must educate ourselves on how to protect
our rights as clinical trial participants. We must also learn about trial
sponsors' (biotech and pharma companies)track records on ethical
treatment of trial participants.
There are two web sites that can help us in this task. See
www.Pdtrials.org , the web site of the Advancing Parkinson’s Therapies
project (APT) to learn about clinical trials in general and more
specifically about those trials that are currently looking for
participants. This project is supported by all the major PD
organizations, and also by many patient advocates. You can also sign up
for email bulletins so that you can get updates on trials and other
information directly. Below is the current newsletter.
At the same time read the Parkinson Pipeline Project's (PPP) draft
Research Participants Bill of Rights at http://pdpipeline.org/rights.htm.
This document has been developed for the patient with Parkinson’s
disease who is considering volunteering or is already participating in
clinical research. Our goal is that these protections for research
participants will be widely adopted by industry and academic sponsors of
clinical trials, and Parkinson's organizations.
The pipeline project was conceived and is run by PWP volunteers, led by
Perry Cohen.
We also track information on new Parkinson's treatments beginning at
pre-clinical stages through clinical trials and FDA approval, and also we
collect information on treatment sponsors.
Please help spread the word about these 2 important Parkinson's
projects.
Thanks,
linda herman
-------------------------------------------------------------------------
Latest newsletter of PDTRIALS.org :
What’s new at PDtrials.org?
In this bulletin:
Clinical Trials Recently Added to PDtrials.org
Clinical Trials Opening Soon
New Printed Information on PD Clinical Trials
Trials Recently Added to PDtrials.org
We now have information and contact details for thirty-seven clinical
research studies actively recruiting patient volunteers on
www.PDtrials.org.
Here are two recent additions to the site:
Gene Therapy for the Treatment of Mid-to-Late Stage Parkinson’s Disease
This trial will evaluate the safety and tolerability of gene therapy to
treat uncontrollable movements (dyskinesias). Gene therapy is an
experimental technique used to treat disease whereby a defective gene is
replaced by a healthy gene. For more details:
http://www.pdtrials.org/trial_detail.php?trial_id=263
Voice, Speech and Swallow Research Study for Individuals with
Parkinson’s Disease
This study will determine the effects of voice and speech treatment on
communication difficulties caused by Parkinson’s disease. For more
details:
http://www.pdtrials.org/trial_detail.php?trial_id=262
Clinical Trials Opening Soon
Study of Anti-depressants for Parkinson’s Disease
Nearly 50 percent of individuals with Parkinson's disease (PD) suffer
from depression—a condition that can reduce the quality of life. This
study will help to learn more about how to treat depression in PD. For
more information :
http://www.pdtrials.org/pressrelease.cgi?id=21
New Printed Information on PD Clinical Trials
We are excited to announce that a new printed bulletin listing clinical
trials is now available.
FREE printed bulletin listing clinical trials seeking participants
This two-page bulletin provides a snapshot of clinical research studies
that are actively seeking participants. It contains a short description
of each study, contact details and the states where the trials are taking
place. The compact format makes it easy to use as a starting point for
your own research, or for a discussion about a particular study with your
doctor.
You can order your copy by visiting PDtrials.org and clicking on Request
Printed Information.
And, if you are a healthcare professional or a member of a support group
and would like to order five or more copies, please email us at
[log in to unmask]
Our success depends on your support. If you know someone who would be
interested in receiving information about Parkinson’s clinical research,
please forward this email.
Subscribe! If you have been forwarded this message and would like to
sign-up for regular email updates from PDtrials.org, please go to
http://www.pdtrials.org/email_notification.php
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
