Clinical Trials for PKD

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:47 AM (GMT -7)   
I will be researching clinical studies and posting for most of kidney disorders.  It will take me time but I will try and get what I can for everyone to keep up with up to date research going on for many diseases.  So bare with me... smilewinkgrin
 

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.

Laurie


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 12:45:32 PM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:48 AM (GMT -7)   
 
HALT PKD Progression of PKD   (HALT PKD)
Intervention:  Drugs -- lisonopril, telmisartan
Sponsors:  NIDDK, Boehringer-Ingelheim Pharmaceuticals, Merck, PKD Foundation
Status:  Recruiting
Enrollment goal: 1,018
Description:  To assess the effectiveness of anti-hypertensive drugs telmisartan and lisinopril on PKD progression and its cardiovascular complications in two different levels of kidney function, GFR more than 60 mL/min/1/73m^2 and GFR between 25-60 mL/min/1.73m^2.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:54:11 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:48 AM (GMT -7)   
Effect of Statin Therapy on Disease Progression in ADPKD
Intervention:  Drug -- Pravastatin
Sponsor: University of Colorado at Denver and Health Sciences Center
Study Phase: III
Status: Recruiting

Age Group:  8-21
Enrollment goal: 100
Description: 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.  

 


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:54:58 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:49 AM (GMT -7)   
 
Somatostatin in Polycystic Kidney: A Long-term Three Year Follow-up Study
Intervention:  Drug -- Long-acting somatostatin
Sponsor:  Mario Negri Institute for Pharmacological Research
Study Phase:  III
Status:  Recruiting

Age Group:  18-75
Enrollment goal:  66
Description:  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.

 


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:55:20 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:49 AM (GMT -7)   
 
Octreotide in Severe Polycystic Liver Disease
Intervention: Drug:  Octreotide (long-acting somatostatin)
Sponsor: Mayo Clinic; Novartis
Study Phase: II & III
Status: Recruiting

Age Group:  18-80
Enrollment goal: 42
Description: 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.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:55:36 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:50 AM (GMT -7)   
 
Lanreotide as Treatment of Polycystic Liver Disease
Intervention:  Lanreotide
Sponsor: Radboud University
Study Phase: II & III
Status: Completed

Age Group:  18-88
Enrollment goal: 38
Description: To assess the effectiveness of lanreotide in controlling total liver volume in patients with polycystic livers.   


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:55:49 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:50 AM (GMT -7)   
 
Efficacy, Safety and Tolerability of Everolimus in Preventing End-stage Renal Disease in Patients with ADPKD
Intervention: Drug -- Everolimus
Sponsor: Novartis
Study Phase: III
Status: Recruiting

Age Group:  18-65
Enrollment goal: 300
Description:  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.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:56:19 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:51 AM (GMT -7)   
 
Rapamycin as a Treatment in for ADPKD:  The Role of Biomarkers in Predicting a Response to Therapy
Intervention:  Drug -- Rapamycin
Sponsor:  Yale Center for Clinical Investigation
Study Phase:  II & III
Status:  Recruiting

Age Group:  18-70
Enrollment goal:  45
Description:  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.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:56:33 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:51 AM (GMT -7)   
 
Sirolimus Treatment in Patients with ADPKD:  Renal Efficacy and Safety
Intervention:  Drug -- Sirolimus
Sponsor:  Mario Negri Institute for Pharmacological Research
Study Phase:  II
Status:  Recruiting

Age Group:  18-80
Enrollment goal:  16
Description:  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.

 


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:56:46 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:52 AM (GMT -7)   
 
Sirolimus (Rapamune) for ADPKD
Intervention:  Drug -- Rapamycin
Sponsor:  The University of Zurich
Study Phase:  III
Status:  Active, enrollment complete

Age Group:  18-40
Enrollment goal:  100
Description:  To investigate whether a low dose of sirolimus retards cyst growth and slows renal functional deterioration in patients with ADPKD.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:57:01 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:52 AM (GMT -7)   
 
Pilot Study of Rapamycin as Treatment for ADPKD
Intervention: Drug -- Rapamycin
Sponsor:  The Cleveland Clinic
Study Phase:  I & II
Status:  Recruiting

Age Group:  18-75
Enrollment goal:  30
Description:  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.  


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:57:17 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:52 AM (GMT -7)   
 
Randomized Clinical Trial of Triptolide Woldifii for ADPKD
Intervention: Drugs – Tripterygium wilfordii, Emodin, Losartan
Sponsors:  Nanjing University School of Medicine, China
Status:  Recruiting
Age Group:  15-70
Enrollment goal: 150
Description:  To evaluate the effectiveness of Triptolide Woldifii to slow disease progression in ADPKD by monitoring total kidney volume and changes in renal function by magnetic resonance imaging  


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:57:32 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:53 AM (GMT -7)   
 
ADPKD Pain Study
Intervention: Procedure:  Videothracoscopic Splanchnicectomy (VSPL)
Sponsors:  Mayo Clinic
Study Phase:  II
Status:  Recruiting

Age Group: 18 and older
Enrollment goal:  20
Description: To evaluate the effectiveness of VSLP procedure for pain management in patients with ADPKD


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Post Edited (LLPLUV) : 6/28/2009 11:57:46 AM (GMT-6)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:53 AM (GMT -7)   
Water as Therapy in Autosomal Dominant Polycystic Kidney Disease (ADPKD)
Intervention: Water Prescription
Sponsor: University of Kansas University
Status: Recruiting

Age Group:  18-50
Enrollment goal:  10
Description:  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.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:58 AM (GMT -7)   
 
High Water Intake to Slow Progression of PKD
Interventional: Water
Sponsors:  New York University School of Medicine
Status:  Recruiting
Age Group:  18-65
Enrollment goal: 20
Description: 
To evaluate the changes in urine composition in PKD patients versus healthy individuals with high water intake by monitoring urinary biomarkers.

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:58 AM (GMT -7)   
 
The Effect of High and Low Sodium Intake on Urinary Aquaportin-2 in ADPKD
Intervention: Drug -- High or low sodium diet
Sponsor:  Holstebro Hospital, Denmark
Status: Recruiting

Age Group:  18-65
Enrollment goal: 25
Description: To examine the effect of high and low diets on kidney function and on hormones that affect the kidney.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:59 AM (GMT -7)   
 
CCB Safety Study in Treatment of Hypertension in ADPKD
Intervention: Drugs -- Candesartan; Candesartan Cilnidipine; Candesartan non-calcium channel blocker (CCB)
Sponsor: Kyorin University, Japan
Study Phase: IV
Status: Recruiting

Age Group:  20-60
Enrollment goal:  150
Description:  To evaluate the safety and efficacy of calcium channel blocker Candesartan in treatment of hypertension in ADPKD patients.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 10:59 AM (GMT -7)   
 
Study for the Second Line Treatment of Hypertension in Patients With ADPKD
Intervention:  Drug -- Candesartan, Cilnidipine, Imidapril
Sponsor:  The Ministry of Health, Labour & Welfare, Japan; Teikyo University
Study Phase:  II
Status:  Not yet Recruiting

Age Group:  20-60
Enrollment goal:  160
Description:  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


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 11:00 AM (GMT -7)   
 
Tolvaptan Tempo 3 / 4 Trial
Intervention: Drug -- Tolvaptan
Sponsors: Otsuka Pharmaceutical Development & Commercialization, Inc.; Otsuka Pharmaceutical Co., Ltd.
Study Phase:  III
Status:  Active; enrollment complete
Age Group:  18-50
Enrollment goal: 1,500
Description:  To evaluate the long-term effectiveness and safety of Tolvaptan by monitoring total kidney volume and cyst volumes by magnetic resonance imaging and measuring a composite of clinical markers in ADPKD patients.

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 11:00 AM (GMT -7)   

Evaluation of ARPKD and Congenital Hepatic Fibrosis

Observational
Sponsor:  National Human Genome Project (NHGRI)
Status:  Recruiting
Age Group:  6 months – 80 years
Enrollment goal:  200
Description:  To collect comprehensive data on kidney and liver disease in ARPKD/CHF and follow patients over time to provide the groundwork for more focused studies and novel therapeutic interventions.

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 11:01 AM (GMT -7)   

The ARPKD Clinical and Genetic Resource

Observational
Sponsors:  National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Status:  Recruiting
Age Group:  Up to 35 years
Enrollment goal:  200
Description:  The Core has three primary objectives: To extend the observational study of ARPKD initiated by the North American ARPKD Database; to provide a mechanism for genetic evaluation of patients with both classic ARPKD and unusual phenotypes of recessive PKD; and to develop educational tools for physicians and patients regarding the natural history, cause, development and effects of the disease, genetic testing, and clinical trials applicable to ARPKD.

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 11:01 AM (GMT -7)   
 
Transplant Registry:  Patients Who May Require Transplantation and Those Who Have Undergone Transplantation of Liver, Kidney and/or Pancreas
Observational
Sponsor: Virginia Commonwealth University
Status: Recruiting

Enrollment goal: 2,000
Description:  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.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/28/2009 11:02 AM (GMT -7)   
CMV Glycoprotein B Vaccine in Allograft Recipients
Intervention: Biological -- CMV gB vaccine, placebo
Sponsor:  National Institute of Allergy and Infectious Diseases (NIAID)
Status: Recruiting

Age Group:  18 and older
Enrollment goal: 140
Description: 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.


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/29/2009 7:31 AM (GMT -7)   
My dad was in a clinical trial for his kidney transplant. He did very well. I remember him going to Columbus OH with his nephrologist to speak at a doctor's convention. I am too chicken to try anything new at the point.
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/4/2009 8:12 AM (GMT -7)   

Same here I cringe at the thought of changing anything.  I'm somewhat functionable don't want to hinder that.

Laurie


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 5:32 PM (GMT -7)
There are a total of 2,731,854 posts in 300,973 threads.
View Active Threads


Who's Online
This forum has 151131 registered members. Please welcome our newest member, veris.
318 Guest(s), 10 Registered Member(s) are currently online.  Details
rollout, Helgramite, Ides, CompositionNotebook, Xmaslover, Girlie, NiceCupOfTea, London Lurker, Tall Allen, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer