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PLD   Studies

Octreotide Clinical Trial Mayo Clinic is currently closed. This study is to check for dose, safety and side effects of once monthly injections of long acting octreotide. There are 42 participants in this two year study. The last participant will finish in April 2010. It is an ongoing double blind study. For more on octreotide click here.
A completed clinical trial last year with Somatostatin Octreotide from Italy concluded that Octreotide was beneficial for diminishing kidney cysts. This next trial is a three year follow up trial at the Mario Negri Institute for Pharmacological Research, Bergamo, Italy. Contact Norberto Perico, M.D., at perico@marionegri.it
To read more about the continuation of this trial, a three year follow up click here.

Sirolimus is a drug given for transplants. The Cleveland Clinic in the USA is considering Sirolimus clinical trials to see if it diminishes kidney and liver cyst growth. A paper by Dr Torres shows that sirolimus decreases liver cyst growth. Rapamune has some very serious side effects and diminishes only to kidney cysts. 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. It also reduces liver cysts.

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

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.
Contact information for the genetic ADPLD study:
Dorothy Spencer, Research Study Coordinator
Mayo Nephrology / Hypertension Division
EI/SL 33 - 200 First St., NW, Roch., MN 55905
Phone: 507-266-3868-2

Fax: 507-255-0770

 

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last updated: Sunday, December 13, 2009 11:47 AM

 

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