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APT: Accelerating the Development of New Treatments for Parkinsonís
What is the Advancing Parkinson's Therapies Campaign (APT)?
Advancing Parkinson's Therapies (APT) is the umbrella name for a community-wide effort comprising organizations within the Parkinson's advocacy community, along with the National Institute of Neurological Disorders and Stroke (NINDS) and other interested groups, to accelerate the development of new treatments for Parkinson's. The concept of APT grew from patients themselves, through an online grassroots network of people with Parkinson's known as the Parkinson Pipeline Project (PPP). Members of this group have been influential in the development of APT ever since.
A major focus of the drive in 2004-05 will be to raise awareness and increase participation of the Parkinson's community in clinical trials through a national public awareness campaign.
Why is there a need to increase awareness of clinical trials for Parkinson's?
Clinical trials are an essential and necessary component for the development of new treatments for diseases. Without such trials, and the patients who participate in them, no new medications or treatments would be possible.
Several factors account for the new urgency of the need for people with Parkinson's to participate in clinical research. First, the demand is rising, as more trials begin to come online. Today, about 5,000 people are needed to participate in PD clinical trials; in two to three years, this number is expected to double.
Many people with Parkinson's do not realize that they are eligible to take part in a clinical trial and that by doing so they can help to move our knowledge of Parkinson's forward. In addition, there are some widely-held misconceptions about how clinical research is conducted. Perhaps the most serious is lack of awareness of the rigorous safety conditions under which clinical research is conducted.
What are the goals of APT?
APT aims to provide better access to information about Parkinson's clinical trials, to increase awareness of the need for patient volunteers, and to educate patient and professional audiences on the value of clinical research. The goal of the campaign is to bring scientists, medical researchers and study participants together to help make new treatments available, more quickly, to the people who need them.
What activities are being planned?
Dedicated resources explaining Parkinson's clinical research and providing information about studies seeking patient volunteers are being developed for patients and health professionals. These include a new website, www.PDtrials.org, which was launched in early November 2004.
The website lists trials that are open for recruitment of patient volunteers, and helps individuals search for trials in their region. Website visitors can also request a copy of a new patient education brochure, Getting Involved in Parkinson's Clinical Research, and sign up to receive updates about new clinical research for Parkinson's by email or mail.
Activities to involve support groups and grassroots PD networks are also being planned. For more information about how your group can support the APT campaign, contact us at firstname.lastname@example.org.
Which patient-voluntary groups are supporting APT?
To date, seven Parkinson's advocacy groups and a variety of other collaborators have demonstrated their support and commitment to this effort by joining the campaign, which is being coordinated by the Parkinson's Disease Foundation.
- American Parkinson Disease Association
- Parkinson's Action Network
- The Parkinson Alliance
- The Michael J. Fox Foundation for Parkinson's Research
- National Parkinson Foundation
- WE MOVE
How can I get involved?
Currently, there are more than 40 different clinical research studies taking place around the U.S. Some of them are testing investigational treatments or therapies that could improve the lives of people living with Parkinson's today. Others (for example, those that study inherited factors or monitor disease progression) do not require a patient to take investigational drugs or treatments as part of the study. Each research study is important in helping us answer questions and to find a cure for Parkinson's.
If you are a person with Parkinson's who is interested in finding out about participating in a clinical trial, please visit www.PDtrials.org or speak with your doctor to find out about trials for which you may be eligible.
Another way in which you can help to influence the availability of new therapies is to become a patient advocate for Parkinson's clinical research. The Parkinson Pipeline Project (PPP) represents the patient perspective and works to influence advocacy, industry and government leaders. Volunteers are always needed. For more information, visit www.pdpipeline.org.