what is the status?
1: Sun Jun 07, 2009 12:30pm neecieap
What is the status of the statin information/research?
2: Wed Jun 10, 2009 3:44pm Connie Lee
Kevin Whitehead is working with his institutional review board to get his study approved. Right now, he'll be focusing on looking at medical histories and imaging of people who have CCM and have been on statins. Many of you that fit in this category have already written him to let him know about yourself. He thinks he may have enough people to get started once he's approved.
Thanks for checking in!
3: Fri Oct 30, 2009 2:16pm Kelley
Has there been any more word? Our neurosurgeon has emailed him-I haven't heard anything yet-but I was curious if anyone here had heard anything new lately?
4: Fri Oct 30, 2009 7:27pm Connie Lee
Kevin Whitehead is having a great deal of trouble getting his institutional review board to approve the project because it requires patients to be recruited through any number of other doctors. He is exploring other options and now has a full-time person on staff to speed things up.
We have our annual Scientific Meeting on Nov 12th-13th and I should have more information after that.
5: Mon Nov 02, 2009 8:41am Kelley
Thank you, Connie. Well, that's disappointing. I will pass the word, however, and look forward to the news after the conference.
6: Wed Nov 18, 2009 1:29am ronbro
I was at the Science Conference in New Mexico last week as an Angioma Alliance volunteer. I can convey this info. to you which I got from Connie which is good news:
? Kevin Whitehead has received approval from his IRB to begin his statin study in Utah.
I had the opportunity to talk with Kevin and his assistant Blake. They are very excited about this study which is just getting under way. We are all hopeful for an effective treatment but the study has to take place first. The research protocols are complex and I was cautioned that there are no guarantees as to the outcome. Be on the lookout for important information about this from Connie.
Now for the human interest side of the story. There were approximately 35 researchers in attendance at the conference. We are truly blessed with an amazing group of people from some of the world's best research institutions. These individuals, for the most part, devote their careers and their passion to solving the mysteries of CCM. Huge progress is being made in understanding what makes CCM tick. Our Angioma Alliance Chief Scientific Officer, Amy Akers, came from this group and shares a special relationship with all the researchers. Amy did a great job organizing the conference this year. Everything went very smoothly. I'd say about half of the presentations were clinical in nature which I mostly understood, and the other half was about genetics of CCM, which might as well been in Swahili. Nevertheless the researchers were all sharing their ideas and collaborating with one another. This is the third Angioma Alliance Science Conference that I've been to and when I see the enthusiasm of these people working together I get all choked up. Every time. Never fails.
Connie and Amy also did a fine job hosting a mini family conference and Cavernous Angioma Awareness week in Santa Fe.
I will defer to Connie to update our community on all of the recent developments and important news which should be coming out in a newsletter sometime in December. I've posted a few pictures from the conference on the Angioma Alliance Facebook page. Watch your mailboxes for the newsletter, you won't want to miss it.
Angioma Alliance Board Chairman
PS. If you have a special skill (for example: publicity, event planning, fundraising, grant writing, computer networking) OR you have some free time on your hands and you want to help, please complete the form on this page: http://www.angioma.org/volunteer.htm
and one of us will contact with you. We can use your help!
7: Thu Jan 28, 2010 10:56pm cribun
So did the study actually start? Does anyone know the details of the study (type of study, sample size, how long it is supposed to last, etc)?
8: Sat Jun 05, 2010 11:51pm neecieap
Any info at all on this?
9: Sun Jun 06, 2010 10:30pm Connie Lee
Right now, the University of Utah team has taken one step back. They are working on a retrospective study. They have access to records of about 5000 cavernous angioma patients in the state of Utah, and they are going to sift through to find those that have been on statins. Then, they can examine those specific records to see if there seems to have been any effect. With some positive preliminary data, they will be able to apply for permission to launch a clinical drug trial and, hopefully, receive approval more quickly.
In addition, UCSD researchers have identified a second medication that works to reduce hemorrhage in mice bred to have cavernous angiomas. It is generically known as fasudil and I don't believe it is available in the US yet. I am not sure what the next step will be for UCSD, but I or Amy Akers will keep you posted when we find out.
10: Mon Jun 07, 2010 4:50am kirkmc
|Quote (Connie Lee @ June 07 2010,05:30)|
|Right now, the University of Utah team has taken one step back. They are working on a retrospective study. They have access to records of about 5000 cavernous angioma patients in the state of Utah, and they are going to sift through to find those that have been on statins. Then, they can examine those specific records to see if there seems to have been any effect. With some positive preliminary data, they will be able to apply for permission to launch a clinical drug trial and, hopefully, receive approval more quickly.|
I don't know much about drug tests, but this seems to make a lot more sense, and could certainly save time if it turns out that statins don't help.
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