Health Topics

Ongoing Research and Centers of Excellence

Andrew Schorr:

Yes, I know it's definitely a family issue. We're going to talk a lot more about that. Dr. Paulsen, it would seem to me now there are 20-something Centers of Excellence with research going on in the U.S. related to Huntington's. Of course, you at the University of Iowa Healthcare Center have been helping pave the way. It would seem like if somebody has this in their family they'd want to connect with a center like that for two reasons; first of all to understand what are they dealing with, and second of all to participate in research so we can get more answers. Wouldn’t you agree?

Dr. Paulsen:

Yes, definitely. I think it's a time where the scientists and the families can no longer just work separately, and I think that has happened in many diseases where the families are the ones on the front lines that have been dealing with the disease, and the scientists were somehow holed up back in their labs with their white coats on, but it's a new day, and we have to join together. What we've found is that the teamwork in Huntington's disease has really exploded our knowledge of this disease, and we just hope that that will continue.

I can definitely give you a little more information. If people need to go to the Huntington's Disease Society of America, that is the group that has endorsed 21 Centers of Excellence, and even if there's not a Center of Excellence near you, don't fret about that. We can provide help and find you assistance for care for this disease even though it's a more rare disease. I think you'll find that the HD community is fairly generous with their time and really want to make it work even if you live in a place that doesn’t have any experts. So, I would really encourage you to contact them and help you get put in touch with somebody who can help you.

Andrew Schorr:

Here's the web site folks. It's www.hdsa.org. We're going to take a break in a second, Dr. Paulsen and Karen Milek joining us from Orlando. We have received many e-mails. You're welcome to call, and we're going to start buzzing through questions about treatments, about family issues, about work issues, about public policy issues. We'll do as much as we can in the hour. I'm Andrew Schorr. Thank you for joining us on www.healthradio.net and Patient Power. We'll be right back.

Andrew Schorr:

Welcome back to Patient Power live on HealthRadio.net and www.patientpower.info and the replays and so much more you can find on www.patientpower.info for you and your family. We've done 500 hours of programs, and isn't it about time we did Huntington's disease? Absolutely. So, here we are. You are sending lots of e-mails to my producer Tamara at questions@patientpower.info. Keep them coming, and we'll do as many as we can.

We're visiting with Dr. Jane Paulsen who is the director or the Huntington's Disease Clinic at the University of Iowa Healthcare Center. She has spent about 15 years of her life at least devoted to this, written many articles, and meets with families all the time, and then we have also joining use Karen Milek from Orlando, Florida, and her family has been greatly affected by this, and she chose to have the genetic test and has tested positive. She has no children herself, as she said she is gay, that was part of the choice but now having the genetic test kind of affirmed how she wanted to proceed. Her sister, who does have children, chose not to be tested.

All right, I just want to cover one key base before we go to your questions for Dr. Paulsen. Dr. Paulsen, so we don't have the treatments we really want to have now. Where is research headed, and does that give people hope?

Dr. Paulsen:

Yes, I'm happy to talk about that, and that's what I wanted to finish up with when Karen talked about the different things that she is taking. Karen is taking a very informed approach to using supplements, and I hope, Karen, you're also talking with your doctor about what supplements you're on so that always your physician wants to look for interactions or any things that can occur, but the informed approach that Karen has taken is based on some of the suggestions made through research, so I thought it would be nice if the listeners had an overview of what's going on.

It's really been an exciting time for Huntington's disease research for many reasons. There are many organizations that are dedicated to Huntington's disease research at this time. There is the Huntington's Study Group that has 70 sites from the U.S., Canada, Europe, and Australia, and they are in the process of running many clinical trials to test treatments for Huntington's disease. Many of the compounds that Karen is currently supplementing herself with are ones that are being tested by this research group. The coenzyme Q10 has undergone a trial in people with Huntington's disease. It also has been tested in people with Parkinson's disease, and we are just embarking upon a new trial with a much higher dose of the coenzyme Q10. So with any of these supplements there will be no recommended dose for them because they're all experimental in that they're now being run through research trials. So, I'd really encourage you to go online to the HSG web site, and I'll give you a few others that are key at this point.

One very new partner that has partnered in Huntington's disease research is CHDI, and that web site is www.chdi-inc.org and they are also helping us move forward on finding a compound to treat and slow Huntington's disease. As a subsidiary of them, they set up a group called the Huntington Project where they asked everyone what are you taking? They asked Karen and all the other families and scientists what are we interested in, and there are scientists that respond, and the set up a project called SET-HD where everyone listed their compounds, and based on this list, CHDI is trying to go through and research every compound suggested, everything that's been out there, and trying to do the proper research so that we can make sure that what we recommend to the families will be safe, well tolerated, and hopefully eventually have a nice impact on the disease, meaning that it will slow it down or stall this progression of this disease. So, the research right now is mind-boggling for me. It's much larger and more exciting than it's ever been before.

Andrew Schorr:

Okay, let's get to lots of questions if we could.

Dr. Paulsen:

Okay, I have one other thing I want to encourage people. There is also a European Huntington's Disease network, so they can go online to EHDN, www.euro-hd.net, and there are 118 sites there.

Andrew Schorr:

All right, wait, let's hold on one second because we're listening on the radio. So, the first web site folks, and I just went to it www.chdi-inc.org, and what's the European one?

Dr. Paulsen:

There's two others that have the clinical sites. That's Huntington's Study Group, which the web site is www.huntington-study-group.org and that will give you trials on the coenzyme Q10, the tetrabenazine, the ethyl EPA which is the fish oil, as well as the creatine.

Andrew Schorr:

And there was one other one you wanted to mention.

Dr. Paulsen:

Right. For the European, I just want people to understand that really this has exploded as a worldwide collaboration, and the European Huntington's Disease Network is the EHDN, and that web site is www.euro-hd.net.