Opinion:  Is there an important pattern in the seemingly uninterrupted failure of drugs and biologics?

On the Toxicity of GDNF: A challenge to Amgen's  monkey GDNF toxicity study

BOOK: "Monkeys in the Middle: How One Drug Company Kept a Parkinson's Disease Breakthrough Out of  Reach" by investigative journalist Nick Nelson, has just been published and is available on Amazon.

The "Access, Compassion, Care, and Ethics for Seriously Ill Patients Act"  or  the Access Act (S3046 ) was introduced in the Senate in May. It is a bill to amend the Federal Food, Drug, and Cosmetic Act to create a new conditional approval system for drugs, biological products, and devices that is responsive to the needs of seriously ill patients, and for other purposes.
For Details, Library of Congress, Thomas 

“What’s in the PD Pipeline?”, a symposium on the newest potential treatments under investigation, was presented by the Parkinson's Disease Foundation and the Parkinson Association of the Carolinas on May 9, 2008
View the webcast

Declaration of Clinical Research Rights and Responsibilities for People with Parkinson's
Clinical research is essential to the development of new therapies and treatments for Parkinson’s
disease. Yet, due to a number of factors, including a lack of awareness and understanding of the research
process, only one percent of people with Parkinson’s participate. This is far below the number needed,
delaying many promising trials.
Read the entire Declaration!

"Ethical Issues in Clinical Neuroscience Research: A Patient¢s Perspective"
Written by Parkinson Pipeline Project members. Published in Neurotherapeutic, Vol. 4, No. 3, 2007.
Read the article

Read the Testimony of Amy Comstock Rick, CEO- Parkinson’s Action Network
For the U.S. House of Representatives Committee on Small Business Subcommittee on Investigations and
Oversight. Hearing on "SBIR: Advancing Medical Breakthroughs"

Tom Isaacs, Parkinson’s advocate from the UK is author of a new book - Shake Well Before Use - the
 story of his inspirational walk around the coastline of Britain to raise money for PD research and
 coping  with Parkinson's from the age of 27.

Forbes Magazine
Former Intel chief talks to Forbes about his battle with Parkinson's and funding the search for a cure
Article - Andy's Grove's Last Stand
Video - Andy Grove on Parkinson's Disease
Video - Michael J Fox's Race Against the Clock

NIH seeking Parkinson's patients for genetic study (5/24/07)

The NIH is seeking Parkinson’s patients to participate in their study of “Phenotype/Genotype Correlations in Movement Disorders.” It’s purpose is to identify possible genetic causes of movement disorders, including PD. A description of the study is available on Clinicaltrials.gov web site at: http://www.clinicaltrials.gov/ct/show/NCT00018889?

One of the Pipeline members who volunteered for this study stated it involves a 2 day visit to the NIH (which was very interesting in itself), a complete physical exam and drawing of blood samples.

From the NIH:

Researchers at the National Institutes of Health are seeking Parkinson’s disease subjects who are between 21-90 years of age and otherwise good health to participate in various research studies.

We invite you to take part in an investigational research study Genetic Characterization of Movement Disorders. We are seeking subjects and family members who have been diagnosed with Parkinson’s disease.

If you have Parkinson’s disease and would like to consider taking part in important research studies at the NIH, there is no cost to participate. Participants will return to their own physician’s care after taking part in a study.

NIH will provided travel and hotel, if needed.

For more information, Please call
Mae Brooks at 301-496-4604 or
1-800-362-3479
Fax 301-496-6609
E-Mail: brooksm@ninds.nih.gov

This study is conducted under safety and testing standards of the Department of Health and Human Services.

Raising Trust in Parkinson’s Clinical Trials, Marshall Loeb reports on an innovative roundtable on  Building Patient Trust: A New Era of Clinical Research Rights and Responsibilities (05/24/07)

New Book Coming Soon!
Could possible cures for Parkinson's be sitting on the shelf because of business decisions?
In "The Uncured : How one drug company shelved a Parkinson's disease breakthrough" , journalist Nick Nelson eloquently captures the real life experiences of Parkinson's trial participants regaining their lives with the use of GDNF in clinical trials, but losing them again following Amgen's abrupt halt of the trials in 2004. Why were they halted?
Read excerpts here    (05/24/07)

Copyright © 2004-2007 Parkinson Pipeline Project.

All rights reserved. Revised: 07/13/08.