Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Got this email and thought I'd pass it on. I called and the short term 8 week study is testing short term release of Tolvaptan. Once you finish the study they told me you can keep taking the Tolvaptan!! I sadly didn't qualify because I only have one kidney (had the left one taken out last summer due to pain).
Dear Fellow PKD Patient and Family Members,
What drives progress? In PKD, progress is driven by patient involvement in medical research to find treatments. Thats why its so important for people diagnosed with PKD to consider participating in clinical trials.
Without people like youpatient volunteers and interested supportersresearch and progress are simply not possible.
The PKD Foundation is now providing Accelerating Clinical Trials (ACT) Alerts, which will notify you when clinical trials in PKD may become available in your area. The goal of the ACT Alerts program is to provide a resource for the latest research advances, new research studies, and information about opportunities to volunteer for clinical trials. Whats more, ACT Alerts simplify the process of finding clinical trials.
Currently, there are two new clinical trials for ADPKD seeking volunteer patients in your area.
The Clinical Research Organization Accelovance is actively recruiting people to participate on behalf of Otsuka Pharmaceuticals in these two clinical research studies for ADPKD.
There are more than 125 trial sites located across the United States. To determine if one of the sites is in your area and to volunteer to participate in either trial, you can contact the Accelovance call center for ADPKD research studies at:
(877) 284-3036.
More information about these two trials can also be seen on a website set up by Accelovance at www.pkdstudy.com.
Additional information concerning these, and all other clinical trials in PKD can be found at the National Institutes of Health (NIH) website:
http://clinicaltrials.gov/ct2/results?term=polycystic+kidney+disease
The NIH website also provides thorough information about the clinical trials process in general where you may find answers to frequently asked questions: http://clinicaltrials.gov/ct2/info/understand
Why do people participate in clinical trials?
Participating in a clinical trial can be a very satisfying and worthwhile experience and should be done in consultation with your healthcare provider. A few of the potential reasons to participate include:
Patient participation in clinical trials brings the medical community one step closer to finding a treatment and/or a cure for PKD;
Clinical trial participants help scientists find therapies and drugs that will improve the quality of life for everyone with PKD;
People who participate in clinical trials may get access to investigational drugs before they become available to the public;
Clinical trial participants gain the opportunity to help future generations of people with PKD.
You should also understand the following important points about PKD clinical trials:
Since each PKD clinical trial is designed for a different research purposea variety of volunteers (people at varying stages of PKD) are needed;
Not all clinical trials test new drugsin many studies researchers monitor participants and their disease (without studying a new, experimental drug);
You dont have to wait until your healthcare team mentions clinical trials to have the conversation on whether participation is right for you.
Today, you can help the PKD Foundation support progress for tomorrow.
We at the PKD Foundation are currently gathering insights from ADPKD patients about their understanding and perspectives on clinical trials. These insights will assist the PKD Foundations efforts to improve clinical trial education and programs to accelerate drug development in PKD. If you have made the decision to contact Accelovance, you will also be asked questions to further this effort.
If you have ADPKD, the PKD Foundation encourages you to consider participating in the clinical trial process by talking with your healthcare team. If you care about someone who has ADPKD, we encourage you to forward this ACT Alert for his or her consideration.
We are sending this ACT Alert periodically between May 2012 September 2012. If you have already received this ACT Alert and considered your participation, please disregard.
Please note that although FDA-approved clinical trials may be of scientific and medical value, the PKD Foundation does not review or endorse these industry studies. The PKD Foundation does not take responsibility for the trial conduct; liability lies within the trials 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.
Clinical research represents our greatest chance for progress in treating those living with PKD. Thank you for joining in the fight against PKD!
Jill A. Panetta, Ph.D.
Chief Scientific Officer
PKD Foundation
Dear Fellow PKD Patient and Family Members,
What drives progress? In PKD, progress is driven by patient involvement in medical research to find treatments. Thats why its so important for people diagnosed with PKD to consider participating in clinical trials.
Without people like youpatient volunteers and interested supportersresearch and progress are simply not possible.
The PKD Foundation is now providing Accelerating Clinical Trials (ACT) Alerts, which will notify you when clinical trials in PKD may become available in your area. The goal of the ACT Alerts program is to provide a resource for the latest research advances, new research studies, and information about opportunities to volunteer for clinical trials. Whats more, ACT Alerts simplify the process of finding clinical trials.
Currently, there are two new clinical trials for ADPKD seeking volunteer patients in your area.
The Clinical Research Organization Accelovance is actively recruiting people to participate on behalf of Otsuka Pharmaceuticals in these two clinical research studies for ADPKD.
There are more than 125 trial sites located across the United States. To determine if one of the sites is in your area and to volunteer to participate in either trial, you can contact the Accelovance call center for ADPKD research studies at:
(877) 284-3036.
More information about these two trials can also be seen on a website set up by Accelovance at www.pkdstudy.com.
Additional information concerning these, and all other clinical trials in PKD can be found at the National Institutes of Health (NIH) website:
http://clinicaltrials.gov/ct2/results?term=polycystic+kidney+disease
The NIH website also provides thorough information about the clinical trials process in general where you may find answers to frequently asked questions: http://clinicaltrials.gov/ct2/info/understand
Why do people participate in clinical trials?
Participating in a clinical trial can be a very satisfying and worthwhile experience and should be done in consultation with your healthcare provider. A few of the potential reasons to participate include:
Patient participation in clinical trials brings the medical community one step closer to finding a treatment and/or a cure for PKD;
Clinical trial participants help scientists find therapies and drugs that will improve the quality of life for everyone with PKD;
People who participate in clinical trials may get access to investigational drugs before they become available to the public;
Clinical trial participants gain the opportunity to help future generations of people with PKD.
You should also understand the following important points about PKD clinical trials:
Since each PKD clinical trial is designed for a different research purposea variety of volunteers (people at varying stages of PKD) are needed;
Not all clinical trials test new drugsin many studies researchers monitor participants and their disease (without studying a new, experimental drug);
You dont have to wait until your healthcare team mentions clinical trials to have the conversation on whether participation is right for you.
Today, you can help the PKD Foundation support progress for tomorrow.
We at the PKD Foundation are currently gathering insights from ADPKD patients about their understanding and perspectives on clinical trials. These insights will assist the PKD Foundations efforts to improve clinical trial education and programs to accelerate drug development in PKD. If you have made the decision to contact Accelovance, you will also be asked questions to further this effort.
If you have ADPKD, the PKD Foundation encourages you to consider participating in the clinical trial process by talking with your healthcare team. If you care about someone who has ADPKD, we encourage you to forward this ACT Alert for his or her consideration.
We are sending this ACT Alert periodically between May 2012 September 2012. If you have already received this ACT Alert and considered your participation, please disregard.
Please note that although FDA-approved clinical trials may be of scientific and medical value, the PKD Foundation does not review or endorse these industry studies. The PKD Foundation does not take responsibility for the trial conduct; liability lies within the trials 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.
Clinical research represents our greatest chance for progress in treating those living with PKD. Thank you for joining in the fight against PKD!
Jill A. Panetta, Ph.D.
Chief Scientific Officer
PKD Foundation
In the Nocturne trial, you're given Tolvaptan for 8 weeks, with an evaluation at the beginning and end.
The Overture trial is observational only. You get an MRI every 6 months for 3 years.
I've been trying to get into the Overture trial, but getting my medical records transferred to Accelovance has been a bit of a pain. Hopefully they keep it open long enough for me to have time to storm the records center and get copies myself.