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Items of Interest
GDNF - An Alternate Method of Delivery, by Parkinson's Med (a blog)
Parkinson's Patients Plea to Amgen: Third Anniversary, by Parkinson's Med (a blog)
Repairing the Parkinson's Pipeline by Robin Elliott, Executive Director of the Parkinson’s Disease Foundation
Terminated PD Experimental Treatments 2004 - present / PD Drugs approved by FDA 2004 - present
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
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
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"
University of Rochester to study ethics of sham surgery [no longer on line]
READ Andy Grove's speech to the Society for Neuroscience in its entirety
Click Here to view selected video clips from Andy Grove's speech at the Society for Neuroscience,
November 4, 2007
See Op-Ed: Profit Over Common Sense
Updated GDNF Information
Survey on SHAM SURGERY in Parkinson’s clinical research. The Results of the recent poll.
Questions and Answers About "Off-Label" Use of Prescription Drugs
The Prescription Drug User Fee Act of 2007 (PDUFA)
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:
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)
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