What drives progress? In polycystic kidney disease, progress is driven by patient involvement in medical research to find treatments. Clinical trials are the final phase in the lengthy drug development process. They are a critical and required step to the development of new therapies. Patient participation is key, however, challenges do exist.
Perhaps the single greatest impediment to clinical trial patient participation/ recruitment begins with awareness. According to a recent report from the National Institutes of Health* that compiled several studies:
- 85% of patients were either unaware or unsure that participation in a clinical trial was an option at the time of diagnosis.
- 75% of these patients said they would have been willing to enroll had they known it was possible.
The PKD Foundation believes it is our role to address this awareness challenge in PKD. In 2011, in recognition of a growing pipeline of clinical trials in PKD, we launched an aggressive program to help create awareness amongst patients and families and speed clinical trial recruitment. The program, Accelerating Clinical Trials, or ACT, leverages the PKD Foundation's various channels of communications to ensure a broad level of awareness, including email, the PKD Foundation website, local and national events and other communications tools to:
- Alert patients and families about clinical trial opportunities
- Provide content and services to learn about the clinical trial process
- Provide information so that patients can discuss ongoing clinical trials with their medical providers
- Provide services to patients to qualify for ongoing trials
- Engage industry sponsors to accelerate clinical trial recruitment
Traditionally, the pharmaceutical industry leverages 'mass media', like television, radio and print advertising, to inform patients about clinical trials. In rare diseases, like PKD, this is often ineffective, as reaching these dispersed audiences can be cost-prohibitive. This makes it difficult for PKD patients to be made aware of opportunities to consider clinical trial participation. The PKD Foundation's ACT Program is designed to streamline this critical information and thereby accelerate the development of a clinical trial pipeline in the growing PKD research field.
We are periodically distributing ACT Alerts (emails) to people who have 'opted in' to the PKD Foundation's email list. If you haven’t received these ACT Alerts but are interested in doing so, please visit our Email Preferrence Center, enter your information and check the 'Clinical Trials and Research' button.
The early results of our last ACT Alert program were encouraging:
- Over 150 people have called the Call Center
- Almost 100 people enrolled, or in the process of enrolling in one of the trials
- More than 75 PKD Foundation have been surveys completed
Participating in a clinical trial can be a very satisfying and worthwhile experience and should be done in consultation with your healthcare provider. With tens of thousands of people living with PKD in the U.S. alone, the PKD community is poised to take steps to transform their willingness into action — and results. The PKD Foundation's ACT Alert Program is one solution to help patients and their loved ones get involved in medical research by making it easier to find trials that are right for them.
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. Together, we can solve it. Get started today — raise your hand and play a part by creating or updating your email preferences with the PKD Foundation and be a part of the ACT Alert Program.