Understanding Clinical Trials
Choosing to participate in a clinical trial is an important personal decision. To help make the decision, this website provides detailed information about clinical trials in general. Individuals with PKD should discuss with their health care providers whether or not participation in a clinical trial is appropriate and advisable for them. After identifying some trial options, the next step is to contact the study research staff and ask questions about specific trials.
In order to participate in one of the clinical trials listed below, an individual must have a diagnosis of PKD. Making the decision to seek an official diagnosis, which then becomes part of an individual's medical records, can be difficult.
If you need further information on any clinical study please email me and I will forward you the information.
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Age Group: 8-21Enrollment goal: 100Description: To determine the effect of pravastatin treatment on renal and cardiovascular disease over a 3-year study period in children and young adults aged 8-21 years with ADPKD.
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Age Group: 18-75Enrollment goal: 66Description: To compare the effects on disease progression of a three year treatment regimen using long-acting somatostatin or placebo in patients with ADPKD and normal renal function or mild to moderate renal insufficiency.
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Age Group: 18-80Enrollment goal: 42Description: To evaluate the effect of Octreotide LAR on liver volumes of patients with severe polycystic liver disease who are not candidates for or decline surgical treatments such as liver cyst fenestration or liver transplantation.
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Age Group: 18-88Enrollment goal: 38Description: To assess the effectiveness of lanreotide in controlling total liver volume in patients with polycystic livers.
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Age Group: 18-65Enrollment goal: 300Description: To evaluate the anti-proliferative drug Everolimus as a means to slow disease progression in PKD by measuring total kidney and cyst volumes and changes in renal function.
Post Edited (LLPLUV) : 6/28/2009 11:56:19 AM (GMT-6)
Age Group: 18-70Enrollment goal: 45Description: To determine if the safety & effectiveness of treatment with rapamycin for patients with ADPKD, patients with be observed for change in kidney (& cyst) size by following the patient's through volumetric magnetic resonance imaging (MRI). To evaluate for change in biomarkers with treatment, blood and urine samples will be collected during the study.
Post Edited (LLPLUV) : 6/28/2009 11:56:33 AM (GMT-6)
Age Group: 18-80Enrollment goal: 16Description: To determine if the addition of sirolimus to conventional high blood pressure therapy can prevent a further increase in or can reduce total kidney and cyst volumes in ADPKD adults with normal and mild to moderate renal insufficiency.
Post Edited (LLPLUV) : 6/28/2009 11:56:46 AM (GMT-6)
Age Group: 18-40Enrollment goal: 100Description: To investigate whether a low dose of sirolimus retards cyst growth and slows renal functional deterioration in patients with ADPKD.
Post Edited (LLPLUV) : 6/28/2009 11:57:01 AM (GMT-6)
Age Group: 18-75Enrollment goal: 30Description: To compare the effects of an anti-proliferative, anti-angiogenesis and tumor-progression-blocking agent on disease progression in ADPKD. Due to the intensive and frequent testing schedule, enrollment is limited to local patients only.
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Age Group: 18 and olderEnrollment goal: 20Description: To evaluate the effectiveness of VSLP procedure for pain management in patients with ADPKD
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Age Group: 18-50Enrollment goal: 10Description: To formulate a water prescription for use in clinical trials to determine the effect of sustained diuresis on the progression of ADPKD. Enrollment is limited to local patients only.
Age Group: 18-65Enrollment goal: 25Description: To examine the effect of high and low diets on kidney function and on hormones that affect the kidney.
Age Group: 20-60Enrollment goal: 150Description: To evaluate the safety and efficacy of calcium channel blocker Candesartan in treatment of hypertension in ADPKD patients.
Age Group: 20-60Enrollment goal: 160Description: To compare the safety and effectiveness of combination therapy to control blood pressure in patients with ADPKD whose blood pressure is not controlled under 120/80 with ARB alone. Either ACE or CCB will be added to the regimen and results will be compared to those on ARB alone.ARB – angiotensin receptor blocker ACE – angiotensin converting enzyme inhibitor CCB – Calcium channel blocker
Enrollment goal: 2,000Description: To make a systematic review of medical records of patients (with patient consent) in the Virginia commonwealth University Health System who have received a liver, kidney or pancreas or who may require one and to enter the data into a secure database.
Age Group: 18 and olderEnrollment goal: 140Description: Post-transplant use of immune-suppressive drugs to prevent rejection of the transplanted organ suppresses the recipient’s immune system. This can result in infection by Cytomegalovirus (CMV), a common infectious agent. The purpose of this study is to determine if a CMV vaccine administered to patients awaiting transplant can produce immunity to CMV in the post-transplant period.
Same here I cringe at the thought of changing anything. I'm somewhat functionable don't want to hinder that.