I registered about a year ago. I haven't had any negative experiences with
the IHRF, and part of the registration process is that even though you are
releasing your medical records for research purposes, your PERSONAL information
is not part of that. When researchers request information from IHRF they release
the medical information, and the pertinent info (like what medications you
were/are on, your age at diagnosis, etc.) They don't send your name or your
address. It's very anonymous as far as your particular info goes.

I think it's important for all of us to participate in this because the more
of us that participate, the more data will be available and hopefully the fast a
treatment, or even a CURE could be found. I know that my information is in at
least two studies: IH and pregnancy, and the genetics study since my family has
4 close members with IH (me, my daughter, my mom and my half-brother). The work
that these doctors and researchers are doing is important, and it's not
something they are going to get rich on.. there aren't enough IH patients
worldwide for anyone to get rich off of us, which is why no one has spent any
significant time or money trying to learn anything about what's happening to
us or a better way to treat IH. Most of the information that is known about IH
is information that has been known for nearly a century, and the treatments are
archeic (sp?).. We need something better than Diamox, Topamax and Lasix.. and
definitely better
than shunting and ONSF all of which can sometimes be worse than the IH.

If you have misgivings about registering, or you are nervous about the use of
your info, then call them. Maybe talking to them will put your mind at ease.

Wishing you pain free days!

Ocean McIntyre

cagoodness wrote:
> I started it and am waiting for the packet but i do not know if i
want
> people i do not know across the country to have my medical records are
> they for real had any one really talked to them from who has IH of am
> I just being a freak. I just got rid of a Doctor who I had a bad
> experience with so I am very Leary about who is getting my information
> should i call the number the news letters seem pretty informed. just
> need to know if any of you out their knew any thing. because I know we
> all are in the same boat.
> hope you are all staying well
> Carol
>




________________________________________________________________________________\
____
Never miss a thing. Make Yahoo your home page.
http://www.yahoo.com/r/hs