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%20For%20Autosomal%20Dominant%20Polycystic%20Kidney%20Disease

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
 

Learn More About PKD 

Informational Webinars

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!

 

Date:  Saturday, February 4th

Time: 9:30 AM to 12:00 PM Arizona Time

Location: Transplant Village at Mayo Clinic

                5811 E. Mayo Blvd.

                Phoenix, AZ 85054

 

Please be sure to submit a topic you would like to discusss by sending an RSVP to your Chapter Coordinator at phoenixchapter@pkdcure.org.

 

Please show up and let's make 2012 the best year ever!!

 

Phoenix Chapter Support Group Conference Calls   

Date:  2nd Saturday of Every Month*

Time: 10:00 AM Arizona Time

Call In Information:

Conference Dial-in Number: (712) 775-7000

Access Code: 945416# 

The purpose of this call is to connect with other PKD patients who can relate to what you're going through. By joining the call, you can listen to others, share your story and engage with an empathetic ear. If you have nothing personal to share, perhaps you can join the call to see if you can lift the spirits of others.

Things to Remember:

* Be mindful of your time so others can share too.
* Be mindful of your wording so you don't frighten others unnecessarily. 
* Honor attendee confidentiality, so those on the call will feel free to speak openly.

*You can also call in on any given Saturday to see if there might be other PKD members on the line "chatting" in between scheduled calls. This is often the case when individuals seek a more frequent and ongoing connection to those who understand what they're going through. So if there's a Saturday coming up and you're ready to make the call - call in! You might just find a perfect PKD buddy to talk to, or the most 'fitting' story to listen to. Either way, there's a good chance that they'll be an individual on the line waiting for someone JUST LIKE YOU to join the call!
 

Congratulations on an Outstanding Walk for PKD!   The money you helped raise will help fund:   Cutting Edge Clinical Trials for PKD Treatments Quality, local and online education featuring internationally recognized PKD Experts Local and online patient support to help you, or your loved ones, manage quality of life issues Advocacy efforts to keep PKD Research Funding a priority And while your event may be over, the fight against PKD continues! Donations for the 2011 Walk are now closed. But you can already start sending in donations for 2012!