Long Island Chapter

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 therapies.  Participating in a clinical trial is an important way for people to help 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, 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 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.

We will be providing information and resources concerning the clinical trial process and about specific FDA-approved clinical trials in PKD, through email communications, Chapter education and communications and on the PKD Foundation website.

Currently, there is a clinical trial for PKD seeking volunteer patients in your area. Please 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

To obtain contact information directly from the trial’s pharmaceutical sponsor for the study center near you, click on the following link:

https://trialinfoemail.pfizer.com/pages/landing.aspx?StudyID=B1871019&StudyName=Bosutinib%20For%20Autosomal%20Dominant%20Polycystic%20Kidney%20Disease

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

Participate in Our Chapter.

Did you know our chapter covers all of Suffolk County, Nassau County and Queens? Our e-mail address is longislandchapter@pkdcure.org. We invite you to come meet us and join the fun! Please e-mail us if you wish to be included on our local chapter e-mail list aned we'll see to it that you receive all the necessary details and meeting minutes so you are best informed. In the event that you would like to be removed from future PKD Foundation e-mails or mailings, please let us know and we'll make that change.

Clinical Trials
Clinical Trials need participants. We have quite a few members currently involved in clinical studies to help understand treatments for PKD. The Temp 3/4 (Tolvaptan) Study is still recruiting patients for participation. If you are interested, find out more about the qualifications and details in our area by using the resources below:

Tempo 3/4 Study:
U.S. Information Line: 866-712-5837

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!

Come join us! At our meetings, you will find a great group of caring, supportive people who all have been touched by PKD in some way and who are willing to share their knowledge of the disease. We also host guest speakers and leaders in the field of PKD that help us continue our ongoing educational awareness program. In order to best meet the needs of our members who hail from Suffolk, Nassau and Queens, we alternate where our meetings are held between an eastern and western location. Please reference the schedule below: 

Check back soon for 2012 Meeting Dates! 

Waldbaum's Dialysis Center

100 Community Drive

Great Neck, NY

631-369-6280

Meetings held in Nassau County are in the 2nd floor conference room of the Waldbaum's Dialysis Center. It is located just north of North Shore Hospital off Community Drive. (The address is 100 Community Drive, Great Neck, NY).

Take the Long Island Expressway to the Lakeville Road/Community Drive exit. Turn onto Community Drive, proceed north past the hospital to the Lake Success Business Park. It will be on your left about 1/4 mile past the hospital. Turn left into the Business Park and proceed up the hill. The Dialysis Center will be right in front of you - park where there is an open space.

Check back soon for 2012 Meeting Dates! 

The Sachem Public Library

150 Holbrook Road

Holbrook, NY 

631-369-6280

The Sachem Public Library is located at 150 Holbrook Road in Holbrook, New York. The library building is approximately half way between the Long Island Expressway and Portion Road on the west side of Holbrook Road across from the Nokomis Elementary School.

Getting to the library from the L.I.E. west of exit 61:

Take Exit 61 off the Expresway and take a left (to go north) on Holbrook Road at the second traffic light on the Service Road. The library is appoximately 1/2 mile north of the L.I.E. on the left side of Holbrook Road across from the Nokomis Elementary School.

Getting to the library from teh L.I.E. east of exit 62:

Take Exit 62 off the Expressway and stay on the service road until the first traffic light after you pass the Symbol Technologies building. Take a right on Holbrook Road (to go north) at the traffic light. The library is approximately 1/2 mile norht of the L.I.E. on the left side of Holbrook Road across from the Norkomis Elementary School.