The National Capital Chapter is Looking for a New Chapter coordinator
A note from Rodney and Kevin:
As we look to the new year we have to decide what we want to be, and what we want to do as a chapter. Over three years ago when Kevin and I accepted the opportunity to become the coordinators for the National Capital Chapter, our hope was that our chapter would be a source of information, awareness, and support for the PKD community in the DC metro area. Outside our annual Walk (which continues to be an outstanding event), our chapter has struggled to establish a consistent presence in our community. Over the years, we have had little participation in our educational and social events. No doubt, much of the challenge is related to our hectic schedules, combined with the traffic headaches endemic to our area. Regardless of the cause, Kevin and I believe it is time for fresh ideas and new energy for our chapter. We will be stepping down as chapter coordinators effective March 1, although we will continue to be active in our chapter. If anyone is interested in becoming the chapter coordinator(s) I encourage you to contact Kevin or me nationalcapitalchapter@pkdcure.org or Amy Lessner amyl@pkdcure.org. Likewise, please don't hesitate to contact us if you have questions. Let's make this a great year for your chapter as we press our fight for the cure!
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
News Flash! The National Capital Chapter now has a Facebook Group Page. Another great way to stay up to date with the National Capital Chapter. Click here to visit our Facebook page.
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