Cystone

[benscuba]

Dear Dr. Goldfarb,

I was wondering about the Cystone study at the Mayo Clinic.
Lets say an individual is on Cupramine or Thiola and their stones are already disolving because of these meds.

Now this same individual take part in the Cystone study, how would the study show whether it was the Cupramine, Thiola or Cystone which actually dissolved the stones?

Ben

[DAVIDGOLDFARB]

Ben,
I'm not sure about the answer. If you are seriously thinking of being in the study and going to the Mayo Clinic I can get you in touch with Steve Erickson who can answer this.

[Carla]

I'm wondering if any of you have heard anything about the Mayo Clinic-Cystone study? I'm sure it's been two years or longer since the study was launched and I thought it was to be completed in a year. Anyone?
:confused:
________
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[Matt Lewis]

Carla,
Great question. I think that the cystinuria portion of the study got a late start because recruitment took longer than expected. By my recollection, i think recruitment of cystinuric patients took nearly a year. So some (probably most) patients have completed the study, but perhaps one or two of the last to sign up are still going through it and "holding up" the overall results.
Wish i could tell you more!
matt

[DAVIDGOLDFARB]

Steve Erickson tells me the results are being analyzed. When we'll know what happened is not clear but I would guess "in the spring". I'm interested in hearing as well of course. Sometimes publication issues prevent data from being released immediately but I have urged Steve to let us know as soon as possible.

[Samsmom]

My daughter Samantha completed the cystone study in September and
as Dr.Goldfarb stated the results have not become available yet.
I can tell you that the cystone did not seem to reduce Sam's cystine levels
nor her stone production unfortunately.