PV Trial

[Barbiebreath]

brcrpatients.com/usa/polycy...

[hunter5582]

Didf you contact them to see what kind of clinical trial they are running?

[Barbiebreath in reply to hunter5582]

No. It’s just something I ran into. I didn’t even read it. Im not personally interested in participating in any trials at the moment but thought someone else might be.

[Barbiebreath in reply to hunter5582]

I just filled out the form. Let’s see if they contact me and what they say.

[EPguy]

They seem to be hiding something. Not my preferred way to gain confidence.

I think it's an agency that coordinates various studies.

It has this description, with the wrong disease, is it mysterious:

<<Your participation could help other people in the future with the same disease, by contributing to advancing Diabetes research.>>

But it's good to know there are more researchers working hard on our conditions.

[Barbiebreath in reply to EPguy]

Hmmmmmm…. That’s why we have you and Hunter! 😃 I didn’t actually read it. Sorry guys.

[hunter5582 in reply to Barbiebreath]

No problem. now I am curious too.

[hunter5582 in reply to EPguy]

They do seem to be a clearing house for clinical trials. Likely an agency for hire for Big Pharma. That is not a bad thing as someone needs to set up the clinical trials. Sounds like you need to call them to get accurate info about what is us with that they are doing.

I don't fancy messing with my treatment plan at this point. Of course if it turns out they just want to interview, monitor and follow people, i might be interested. Particularly if it involves an all-expense trip to Florida with a little money on the side. I could do with a couple of good seafood dinners and a trip to the beach! Seems it is not far from Ft. Lauderdale. Maybe a bunch of us could go and have a PV Beach Party!

Seriously though, I do hope that people interested will be willing to access clinical trials for PV. It is the only way things will move forward.

[EPguy in reply to hunter5582]

I suspect the trial is accessible by another way, but they want to be a choke point on the access to get a piece of it. A well known agency arrangement.

But a free vacation would be worth a middleman...