Updated: 12/17/2014

Active Studies – Not Yet Recruiting


Clinical and Molecular Description of PKD1 and PKD2 Mutation Negative Carriers in ADPKD (GeneQuest)

The aim of this study is to identify families with ADPKD , characterize the phenotype and screen for mutations in known genes (PKD1 and PKD2, and then HNF1b and UMOD in PKD1 PKD2 negative carriers).

Genome wide analysis will be performed in families without mutations identified.

Blood collection

Age Group:
16 and older

France — many locations — see website for more information

Participant Information:

  • Both affected and non-affected relatives of PKD1 and PKD2 negative ADPKD patients will be recruited
  • DNA samples will be collected

Inclusion Criteria for the Proband:

  • Patients with a diagnosis of ADPKD
  • Written informed consent
  • Affiliated or benefiting from a national insurance

Exclusion Criteria for the Proband:

  • Subjects unable to provide written informed consent
  • Previous Molecular analysis of PKD1 and PKD2 genes with identification of the pathogenic mutation

Inclusion Criteria of the Relatives (affected or non affected):

  • Relatives with a diagnosis of ADPKD
  • Relatives over age 30 for whom the diagnosis of ADPKD has been discarded (non ADPKD relatives) with renal ultrasonography performed after age 30
  • Written informed consent; affiliated or benefiting from a national insurance

Exclusion Criteria for the Relatives:

  • Subjects unable to provide written informed consent
  • Age under 30 for the "non-affected" relatives

Contact Information:
Emilie Cornec-Le Gall, M.D.
298347061 ext.+33


Lanreotide in Polycystic Kidney Disease Study (LIPS)

LIPS study (Lanreotide In Polycystic Kidney Disease Study) is a prospective randomized double blind placebo controlled study. The main objective is to prove that lanreotide, a somatostatin analog, is able to reduce the glomerular filtration rate decline over 3 years by at least 30%. Cardiovascular outcomes, blood pressure, quality of life and safety are among the secondary outcomes. The study, which will include 180 ADPKD patients, is scheduled to start in early 2014.

An equal number of patients with chronic kidney disease stage 2 (90 patients with GFR 89 to 60 ml/mn/1.73 m2) and chronic kidney disease stage 3 (90 patients with GFR 59 to 30 ml/mn/1.73 m2) will be included. The primary endpoint (GFR decline) will be assessed by repeated measures, in the overall population as well as in the two GFR stratus.


  • Drug: Lanreotide
  • Drug: Saline

Age Group:
18 and older

Necker Hospital - Paris, France

Participant Information:

Inclusion Criteria:

  • ADPKD (clinical, familial, imaging grounds)
  • Measured GFR: 30 to 89 ml/mn/1.73m2
  • Affiliated with health insurance
  • Written informed consent

Exclusion Criteria:

  • Iohexol /iodine allergy
  • Diabetes mellitus
  • Other associated nephropathy suspected
  • Previous malignant disease
  • Cholelithiasis
  • Uncontrolled hypertension (BP>160/100 mmHg)
  • Cardiac failurev
  • Liver failure
  • Psychiatric illness
  • Pregnancy, lactation, lack of contraception
  • Use of somatostatin analogs during the last 6 months

Contact Information:
Dominique Joly, M.D., Ph.D.
1 44 49 54 15 ext. +33

Laurence Lecomte, Ph.D.
1 71 19 64 94 ext. +33


Your Organization

2000 Daniel Island Drive, Charleston SC 29492
Phone: 800.443.9441 | Fax: 843.216.6100

©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.