An Open Letter from the PKD Foundation's Chief Scientific Officer
Dear PKD Family,
To find treatments and a cure for PKD, people diagnosed with PKD need to consider participation in human clinical trials of experimental new therapies. Participating in a clinical trial is an important way for people to help to find a cure for PKD and its complications. That's particularly true today, when the Foundation’s nearly 30 years of research leadership has brought us to the point where scientific advances made in the laboratory are being tested in people.
In order to ensure you have the information you need to consider clinical trial participation, the PKD Foundation has created a new communications program, called Accelerating Clinical Trials Alert, or ACT Alert. This program is designed to help people with PKD better understand what is involved in participating in a clinical trial, and to simplify the process of finding trials that may be of interest to them or to their family members. The goal of this program is to serve as a resource on the latest research advances, new research studies, and information about opportunities to participate in clinical trials.
Through email communications, Chapter education and communications and on the PKD Foundation website, we will be providing information and resources concerning the clinical trial process and about specific FDA-approved clinical trials in PKD.
Currently, there is a clinical trial for PKD seeking volunteer patients in your area. Please click on the link below to obtain contact information directly from the trial’s pharmaceutical sponsor for the study center near you, go to:
https://trialinfoemail.pfizer.com/pages/landing.aspx?StudyID=B1871019&StudyName=Bosutinib For Autosomal Dominant Polycystic Kidney Disease
Click on the link below to the National Institute of Health’s (NIH) Clinical Trials information website for specific information about this clinical trial, being sponsored by Pfizer:
http://www.clinicaltrials.gov/ct2/show/NCT01233869?term=polycystic kidney disease&rank=7
The NIH clinical trials website provides comprehensive information about the clinical trial process, with answers to many frequently asked questions, located at:
http://www.clinicaltrials.gov/ct2/info/understand
If you have PKD, we encourage you to consider participating in the clinical trial process by speaking with your medical team. If you care about someone else who has PKD, we encourage you to forward this ACT Alert to them for their consideration.
Please note that although FDA-approved clinical trials may be of scientific and medical value, the PKD Foundation does not review these studies and therefore cannot endorse participation in them. The PKD Foundation does not take responsibility for the trial conduct; liability lies within the trial’s sponsor and participating university/hospital/clinic. Inquiries regarding trials should be directed to the trials contact person or institution, not the PKD Foundation. The PKD Foundation does not take responsibility for accuracy of clinical trial information provided.
Thank you for joining in the fight against PKD!
Jill A. Panetta, Ph.D.
Chief Scientific Officer
PKD Foundation
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Thanks to Northwest Kidney Centers! NKC is a major supporter fo the Seattle Chapter. They always have a team at the Walk for PKD and invite us to their many events. While we all hope to never need their dialysis service, it sure is nice to know they're there AND will take good care of us! Thanks NKC!