www.PDtrials.org: Increasing Parkinson’s Clinical Trial Awareness through the Internet

Abstract

PDtrials^⁎ is a national initiative dedicated to increasing education and awareness about clinical research by providing information to help people with Parkinson’s learn and make informed decisions about participating in clinical trials. www.PDtrials.org is a first-of-its-kind website that lists over 50 clinical studies seeking participants. It sees over 25,000 visits per month and has an email list of close to 2,500.

PDtrials was initiated in response to a concern within the Parkinson’s community about the low levels of awareness and participation in clinical research. As many as one million people in the U.S. live with Parkinson’s yet less than one percent participate in clinical studies—far short of volunteers that researchers anticipate will be needed over the next two to three years.

In October 2005, the PDtrials campaign initiated a series of online marketing strategies to increase visibility for www.PDtrials.org. These included the development of a monthly HTML email newsletter—the PDtrials Bulletin and engaging in “viral” marketing, such as forwarding the PDtrials Bulletin to contacts throughout the community.

The results were an increase in average daily visitors from 465 in September 2005 to 822 in January 2006 and an increase in overall visits from 13,956 in September 2005 to 25,506 in January 2006. In addition, over 50% of PDtrials Bulletin recipients opened the email and clicked through from the Bulletin to www.PDtrials.org. This compares with a nonprofit industry standard of a 30% open rate and 3% click-through rate.

Various strategies have been employed to increase web traffic to www.PDtrials.org. The greatest success has been through online cultivation of individuals who have requested to receive information about clinical studies and who are thought to be interested.

*PDtrials is led by the Parkinson’s Disease Foundation in collaboration with the American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, the National Parkinson Foundation, the Parkinson’s Action Network, The Parkinson Alliance and WE MOVE. The campaign is advised by the National Institute of Neurological Disorders and Stroke (NIH), the Parkinson Study Group, the Parkinson Pipeline Project and the Parkinson’s Institute.