UPCOMING EVENT!
Join us on Sunday Feb 12 at 5pm for a fun event at the Agua Caliente Casino in Rancho Mirage that will also raise funds for PKD research!
Dancing with our Stars is an event raising funds for a variety of charities. One of the dancers, Tami Gorman, is a PKD patient and transplant recipient. Half of the funds raised in her name will go to the PKD Foundation. Details are found here: http://www.dancingwithourstars.net/
An Open Letter from the PKD Foundation's Chief Scientific Officer, Jill Panetta
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 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 here 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 PKD clinical trial enrolling in various locations across the United States, but unfortunately, there is not yet a trial site in your area. We need your help in finding one. Empowered PKD patients and caregivers can play a vital role in helping to raise awareness amongst PKD medical providers in your area and alert them to the opportunity to become a clinical trial investigator for this trial. Ultimately, it is up to the physician to decide if they want to participate and then contact the trial’s pharmaceutical sponsor to determine if they qualify, but quite often, they are not aware that a clinical trial opportunity exists.
Here’s how you can help:
1. Go to http://www.pkdcure.org/ActOnline.aspx, provide the PKD Foundation with the contact information of your healthcare provider, and we will email them a Physician ACT Alert. This Alert will provide them more details about the trial, as well as contact information to Pfizer. It will not provide them your name or contact information.
and
2. Talk to your healthcare provider directly about this clinical trial and refer them to the link below for more information. The link below will provide you and your healthcare provider with specifics concerning this ongoing trial.
http://www.clinicaltrials.gov/ct2/show/NCT01233869?term=polycystic kidney disease&rank=7
Additional Information for You
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 Panetta, PhD
Chief Scientific Officer
PKD Foundation
Learn More about PKD.
Don’t miss out on our series of quarterly webinars designed to provide education and information about various medical and lifestyle issues related to polycystic kidney disease.
Click here to visit our NEW learning center and to view our FREE educational webinars!