Clinical studies are a critical and required step to develop new therapies. Our Clinical Trial Awareness Program (CTAP) creates awareness among patients and families to speed up recruitment and increase participation in clinical studies. The program is focused on educating patients about current studies so they can make educated decisions about their participation. The goal is to simplify the process of finding clinical studies for PKD patients in their geographic area by sending Accelerating Clinical Trials (ACT) Alert emails about studies that are being conducted.
Why is it important?
Today, approximately 80 percent of all clinical trials fail to recruit enough volunteers within planned timelines. Under-enrollment is potentially one of the most significant problems facing PKD drug development. We believe empowered patients are the key to accelerating the development of a robust treatment pipeline. Without participation in research, medical breakthroughs cannot happen and new therapies cannot be approved for patient use.
What progress has been made?
Below are the conversion rates (the number of those who contacted the coordinator after learning about it from the ACT Alert) for the three ACT Alerts sent in fiscal year 2014.
- Identifying Genetic Modifiers in PKD Clinical Research Study in Atlanta
Conversion rate: 7%
- Identifying Genetic Modifiers in PKD Clinical Research Study in Colorado
Conversion rate: 12%
- Study of KD019 in ADPKD
Conversion rate: 0.2%
In the U.S., there are more than 40 clinical studies related to PKD. More than half are currently active, and the majority of those are recruiting participants. We will continue to work to inform people about current and new studies to increase participation.
We invested $25,000 in CTAP in fiscal year 2014.