PLD Studies

Octreotide Clinical Trial Mayo. This completed study to check for dose, safety and side effects of once monthly injections of long acting octreotide has been extended for two more additional years, four years total for the 42 original participants. The Mayo is considering another octreotide trial for PLD for individuals who have never taken octreotide.
A completed clinical trial last year with Somatostatin Octreotide from Italy concluded that Octreotide was beneficial for diminishing kidney cysts. A three year follow up trial at the Mario Negri Institute for Pharmacological Research, Bergamo, Italy. Contact Norberto Perico, M.D., at

Lanreotide is in clinical trials in the Netherlands. There is a study in Belgium, and in Italy. We are very hopeful this drug will prove useful for the treatment of PLD Polycystic Liver Disease.

Sirolimus is a drug given for transplants. The Mayo Clinic in the USA is looking at cystic livers with individuals already taking sirolimus. A paper written by Dr Torres shows that sirolimus decreases liver cyst growth. Rapamune/sirolimus has some very serious side effects. A prospective review of PKD transplant patients showed a 23% decrease in kidney cysts on a very small limited number of patients (I think it was 4). Rapamune is not to be taken lightly. However if one has had an organ transplant, it might be useful as it also reduces liver cysts.

ADPLD Autosomal Dominant Polycystic Liver Disease Genetic Study
This study is for individuals with only liver cysts, without any kidney cysts. Without kidney cysts and only liver cysts, it is likely that this is ADPLD, autosomal dominant polycystic liver disease. Your participation would help researchers looking at polycystic liver disease. The researchers for the ADPLD study are Dr. Peter Harris, Dr Torres and Dr. Somlo. This requires a donation of a test tube of your blood. A kit can be mailed to you and you can mail it back in a pre-paid envelope. An article on the gene discovered for ADPLD is here. polycystic kidney disease polycystic liver diseasecontact us
last updated: Friday, August 19, 2011 7:19 AM